22q community!
We are less than 4 weeks from race day! We are trained, we are geared up, we are ready!
The thing is... we're missing some names. We've been hard at work fundraising for this race. Because of the amaziing generosity of our friends, families, and you, the 22q community, we've officially raised $13,869 to date, with more checks to be sent in to the Dempster Family Foundation. We believe that by race day, we'll have hit our goal, having raised more than $20,000 to help families llike yours and mine!
This means, we'll be able to carry 200 names, one for each of the 200 miles the 12 of us are running, each one dedicated to a 22 q-tie! We have 70 miles attached to names at present time - help us reach 200 names!
DONATE TO THE DEMPSTER FAMILY FOUNDATION IN HONOR OF OUR RAGNAR RELAY RACE AND YOUR 22-QT!
Tuesday, September 8, 2015
Thursday, August 27, 2015
Laura and Scarlett Lopez
Our team suffered a blow earlier this week when one of my best friends and my college roommate Meghan announced she would no longer be able to run Ragnar with us because of a hip fracture from training! We scrambled a bit, but today it is an absolute pleasure to introduce you all to the newest member of #werun22q, Laura Lopez, running on behalf of her 22q-tie Scarlett!
Scarlett has 22q distal deletion syndrome, and she was diagnosed at a month old. She was only 3 pounds, 10 ounces when she was born, which is what led us to genetic testing. Since that time, I've learned more about 22q than I ever thought possible, and more importantly, I've learned how amazing and capable my daughter is. Scarlett has taught me more about life in her four years than I've learned in my entire life. I'm honored to be her mother. Through all of the struggles, I just remind myself that she's stronger than I could ever be.
I'm coming onto this team as a late arrival. When I first heard about the amazing group of 22q parents and supporters that were running the Ragnar Relay for 22q awareness, I thought to myself, "I can't wait to be on that team next year". But here I am, two months later, on the team! I'm ready to run some miles and conquer my first major race, all in the name of 22q!"
//
It completely amazes me how awesome this 22q community is. I think I may have mentioned it before, but it's worth typing again. Kate and I met through facebook and instagram, when we realized through looking at pictures that we had more than a couple of things in common. When we decided to pitch this team, we both reached out to people we knew who either ran, or had potential to be a runner (I'm looking at you, awesome Kari!) This week, when a little panic set in because we are 5(!) weeks out from race day and were in need of another runner, STAT, Kate texted me and said, I know that Laura started running a couple of months ago and was interested in running with us next year. I found her on facebook and next year became RIGHT NOW! I am so thankful, Laura, that you were able to work things out with your family and join us!
//
We are ramping up our begging efforts for donations to the Dempster Family Foundation! The race is 5 weeks from tomorrow! We will need to get things in order for mile sponsorships at least a week before we leave for DC - if you are anything like me, I get the last minute procrastination thing. Really, I do! But, if you are at all interested in dedicating a mile for your loved one, please consider doing it today! No donation is too small! Help us meet our goal of raising funds and awareness for 22q!
Friday, August 21, 2015
Katie Chiet and Chase Serban
It has been so awesome "meeting" these other 22q moms and sharing our stories (I know we'll have LOTS to talk about during our 36+ hours together in the van!). It is incredible to know that while we all have different backgrounds and come from different places, we share a lot of the same experiences. Today, I would like to share my story and why this run is so important to me!
My pregnancy with Chase was pretty uneventful. I was working full-time as a physical therapist and busy, busy, busy. I ran throughout my pregnancy; my last race was a 4-miler at 32 weeks, but I was able to complete a marathon and a half at 16 weeks! I was seen by a team of midwives and was followed by an MFM doctor, just as all of their patients were. At 32 weeks, he noticed that I was developing polyhydramnios, and I was brought in weekly for fluid checks. By 37 weeks, my AFI was up to 44cm, and an induction was scheduled for when I would be 39 weeks to hopefully prevent cord prolapse. We discussed that a neonatal team would be present at the birth, but I'm not sure that ever equated in my brain or heart to a problem. (We were never offered any further testing despite the polyhydramnios)
Chase came into this world and I was allowed to snuggle with him for a couple of minutes before he was whisked away to the NICU. Because a lot of this is HIS story and not mine, I'm not going to overshare! He spent 10 days in the NICU (apparently I STILL hold the record at 11 days!) and it felt like every.single.day we came in to visit him, we were told of another problem. By the time we left the hospital, we had follow-up appointments with cardiology, ENT, GI, surgery, the pediatrician, and orthopedics.
When he was a couple of weeks old, someone suggested that all of his medical issues could be related. There was no mention of anything specific, but it was enough to get me questioning. I went home and consulted with Dr. Google (right?!) and DiGeorge Syndrome popped right out to me. We made the appointment with genetics. Then we needed to switch insurance and had other small crises to deal with and genetics got pushed on the back burner. My mom and I kept a checklist of 22q symptoms and quietly checked things off as we noticed them in Chase. Finally, when his heart defect went from a simple thing to a much more complex finding, I knew in my heart Chase had 22q.
His genetic testing came back a week before he turned 1, and we had the official word. Chase DID have 22q11.2 deletion syndrome. We added more specialists - endocrinology and immunology - and started services with Early Intervention.
I am a healer by profession. My passion in life was working with patients who had suffered a traumatic brain injuries and spinal cord injuries. My life's work was to help these amazing people get through their injuries and return to living life again. I am thankful to have this background as I navigate this new world with Chase. It is incredibly hard to know that I cannot "fix" him, but it is rewarding to know that I can help him in every and any way I can.
One of the ways I know to help Chase is through my running. I ran previously for other charity teams - it is an amazing way to raise funds and awareness. Running is my therapy - it helps me cope with the stresses of everyday life, the frustrations of 22q, the joys of successes we have, everything. When I saw another group have such success with running a Ragnar for their charity, a light bulb went off for me. A couple of facebook messages later, and this team was formed. 12 dedicated runners, each one of us loving one or more special 22qtie(s), wanting to bring attention to our daily fight. OUR. AS IN OUR WHOLE COMMUNITY. I'm not a doctor. I cannot change the challenges we were given - I can only try to find ways to help deal with them. Raising awareness and funds to help families like ours is so important to me. Despite working in a medical field, and having taken multiple courses on pediatrics, I had NEVER heard of 22q before Chase came into my life. Now it IS my life.
//
I want YOU all to know how amazing these 11 other runners are, which is why I started this blog in the first place. They are just like you and I. They are parents first, runners second. I have never met more awesome people. Each person has brought their natural strengths to this team and I am SO proud of what it has become. I am so grateful that they were all on board to join this crazy team and so lucky that they have become my tribe.
We are 6 weeks out from toeing the start line. We want to run for as many of YOUR loved ones as possible. While our suggested donation is $100 per mile, we will accept whatever you are able to donate! Please consider allowing us to honor your 22qtie! You can visit our #werun22q's Dempster Family Foundation fundraising site or if it is more convenient, text "22qrun" to 71777 (standard messaging rates apply) and donate right over your cell phone! As of this posting, we have 34 of our 205 miles covered - please help us in our goal to have ALL 205 miles dedicated!
THANK YOU!
My pregnancy with Chase was pretty uneventful. I was working full-time as a physical therapist and busy, busy, busy. I ran throughout my pregnancy; my last race was a 4-miler at 32 weeks, but I was able to complete a marathon and a half at 16 weeks! I was seen by a team of midwives and was followed by an MFM doctor, just as all of their patients were. At 32 weeks, he noticed that I was developing polyhydramnios, and I was brought in weekly for fluid checks. By 37 weeks, my AFI was up to 44cm, and an induction was scheduled for when I would be 39 weeks to hopefully prevent cord prolapse. We discussed that a neonatal team would be present at the birth, but I'm not sure that ever equated in my brain or heart to a problem. (We were never offered any further testing despite the polyhydramnios)
Chase came into this world and I was allowed to snuggle with him for a couple of minutes before he was whisked away to the NICU. Because a lot of this is HIS story and not mine, I'm not going to overshare! He spent 10 days in the NICU (apparently I STILL hold the record at 11 days!) and it felt like every.single.day we came in to visit him, we were told of another problem. By the time we left the hospital, we had follow-up appointments with cardiology, ENT, GI, surgery, the pediatrician, and orthopedics.
When he was a couple of weeks old, someone suggested that all of his medical issues could be related. There was no mention of anything specific, but it was enough to get me questioning. I went home and consulted with Dr. Google (right?!) and DiGeorge Syndrome popped right out to me. We made the appointment with genetics. Then we needed to switch insurance and had other small crises to deal with and genetics got pushed on the back burner. My mom and I kept a checklist of 22q symptoms and quietly checked things off as we noticed them in Chase. Finally, when his heart defect went from a simple thing to a much more complex finding, I knew in my heart Chase had 22q.
His genetic testing came back a week before he turned 1, and we had the official word. Chase DID have 22q11.2 deletion syndrome. We added more specialists - endocrinology and immunology - and started services with Early Intervention.
I am a healer by profession. My passion in life was working with patients who had suffered a traumatic brain injuries and spinal cord injuries. My life's work was to help these amazing people get through their injuries and return to living life again. I am thankful to have this background as I navigate this new world with Chase. It is incredibly hard to know that I cannot "fix" him, but it is rewarding to know that I can help him in every and any way I can.
//
I want YOU all to know how amazing these 11 other runners are, which is why I started this blog in the first place. They are just like you and I. They are parents first, runners second. I have never met more awesome people. Each person has brought their natural strengths to this team and I am SO proud of what it has become. I am so grateful that they were all on board to join this crazy team and so lucky that they have become my tribe.
We are 6 weeks out from toeing the start line. We want to run for as many of YOUR loved ones as possible. While our suggested donation is $100 per mile, we will accept whatever you are able to donate! Please consider allowing us to honor your 22qtie! You can visit our #werun22q's Dempster Family Foundation fundraising site or if it is more convenient, text "22qrun" to 71777 (standard messaging rates apply) and donate right over your cell phone! As of this posting, we have 34 of our 205 miles covered - please help us in our goal to have ALL 205 miles dedicated!
THANK YOU!
Thursday, August 6, 2015
An Open Letter About Our Charity of Choice
I received an email last night (yay!) and I'd like to address it here! Thank you for helping me understand some concerns about our charity of choice and please let me explain:
There was a lot of consideration when we first had the idea to try to pull this race off. We spoke with both 22q.org (Sheila) and the Dempster Family Foundation (Michelle). My first instinct was to go with the DFF and please let me explain why. Eighty years ago, no one had ever heard of ALS, although it was around and killing young men and women in their prime. Then one day, a young Yankee named Lou Gehrig announced that he could no longer play baseball because ALS was robbing him of his ability to function. Suddenly, everyone had heard of Lou Gehrig's Disease. While this disorder that is affecting our loved ones will never carry a moniker like that, i do believe that it helps to have a recognizable name to something that is considered rare - it makes it relatable to people; 'oh look, so-and-so's child has it too!'. (Many other charities have names lent from athletes or famous people - It seems that in order to bring in funding to a cause, it needs to be associated with someone the public recognizes)
This is an event that we are hoping to do annually, and the DFF offered to partner with us and help create the platform to do the fundraising. Due to it being the first year and not knowing what to expect from fundraising, we thought it would be more beneficial to donate whatever was raised to the DFF, since their mission is awareness and education focused. If we can have success this year, which is only possible with the support of the 22q community coming together and recognizing that all organizations out there have the same intention of helping the 22q community as a whole, then we fully intend on involving more organizations in the future races.
As i mentioned, we have spoken with 22q.org, and they completely understand and are supportive of us donating to the DFF. And they also know that if we can make this a successful race this year, we hope to expand upon it next year. The Dempster Family Foundation is one of the leading donors/contributors to 22q.org, so in effect, they will see a benefit from the monies we raise.
(Please remember that we are only parents of children with 22q on a mission to raise awareness and provide assistance for families like ours - in no way are we professionals ;) we have received no financial assistance in pulling this together - i paid the team's $1600 registration fee personally and we've all been asking friends and family to help us foot the bill for van rental, gas, and equipment, in addition to the official fundraising we're doing, so that all of money received from families like yours goes directly to helping families like yours!)
Also, if you have time, please consider checking out all of the educational materials on the Dempster Family Foundation website; if you haven't already, i think you might be pleasantly surprised to see what they offer in terms of webinars and publications.
All of this being said, if you still feel adamantly about your donation going to the international 22q foundation instead, by all means, please donate there. Give us a shout out (and some way of knowing that a donation has been made) and we'll be more than happy to include your loved one on our journey. The truth is, we want to bring 22q awareness more than anything and there are so many good charities out there. If you are in Australia, donate to VCFSFA; in the United Kingdom, try Max Appeal, etc. Just let us know you donated and we'll be happy to carry your q-t along! We strongly believe in the Dempster Family Foundation and so they'll continue to be our charity of choice!
https://app.mobilecause.com/vf/22qRun
Please keep your feedback coming! It truly helps to make this successful, which is all any of us should want as we continue our mission to spread awareness and hope.
Katie Chiet, Chase's mom and team captain #werun22q
Tuesday, July 28, 2015
Training update!
Please excuse the absence of blog posts this last 2 weeks - Chase and I (and sometimes John) have been traveling and then there was the issue of the broken arm and so I've been away from the computer!
We are 9 and a half weeks out from Ragnar DC so I wanted to share with you some training updates from the team. I am so incredibly proud of the team we've managed to put together - I'm sure most of you understand the time commitment required to properly train for a high mileage race and when you factor in that ALL of our training time is happening during the heat of the summer, well, it hasn't been a totally easy process!
From Kate: "I swear, it was not this hot when I trained for my half marathon last summer! Whew- talk about some sweaty training runs! I am training for my first ever full marathon along with the Ragnar, so I joined a local run shop's training group. It's been so fun to meet other runners, and share with them why I am running the Ragnar! We have a detailed training plan, with a 6-7 mile work out each week to work on our speed, plus we have 3 days a week where we do 5-6 "easy" miles on our own. Then, we get together as a group and run a long run on Saturday mornings...the month of August will end with an 18 mile run! I've definitely begun seeing progress, and have improved my speed by shaving 30 seconds off my mile pace so far, so I think I will be ok to maintain an 11 minute mile for the Ragnar! Say a prayer for no injuries!"
We are 9 and a half weeks out from Ragnar DC so I wanted to share with you some training updates from the team. I am so incredibly proud of the team we've managed to put together - I'm sure most of you understand the time commitment required to properly train for a high mileage race and when you factor in that ALL of our training time is happening during the heat of the summer, well, it hasn't been a totally easy process!
From Kate: "I swear, it was not this hot when I trained for my half marathon last summer! Whew- talk about some sweaty training runs! I am training for my first ever full marathon along with the Ragnar, so I joined a local run shop's training group. It's been so fun to meet other runners, and share with them why I am running the Ragnar! We have a detailed training plan, with a 6-7 mile work out each week to work on our speed, plus we have 3 days a week where we do 5-6 "easy" miles on our own. Then, we get together as a group and run a long run on Saturday mornings...the month of August will end with an 18 mile run! I've definitely begun seeing progress, and have improved my speed by shaving 30 seconds off my mile pace so far, so I think I will be ok to maintain an 11 minute mile for the Ragnar! Say a prayer for no injuries!"
Jocelyn is hanging out in Nova Scotia with family and reports that she's been getting in some good miles! She tells me that there are some nice hills for her to train on and that she is feeling good!
Kari tells me that she has been averaging at least 10 miles a week. This is awesome because before I asked her to be on this team, she wasn't even a runner! She said she ran her fastest mile yet last week too! Yay Kari!!
Christy is in beast mode. She and Ben seem to be always in motion! :) They have two of the sweetest little girls who help pace them on their bicycles on long runs. Rain, shine, heat, humidity, morning, and night, they are truly a #fitfamily! Every time I check in with them via social media, they are on the move.
I'll share with you what's happening here with me! When I decided this team was a reality and we were a go, I started to put Chase in gym childcare to get some treadmill miles in. The heat and humidity here in south Florida are just brutal, but there aren't too many hills for me to practice on (I have to get ready for 11 miles of rolling hills for leg 24!). I've been lucky though - on my travels this summer, I've been able to run in lots of different locations, including Ft. Mill, SC and beautiful Kensington MetroPark in Michigan. Both places have given me good opportunities to run on terrain I don't get here. My brother-in-law in Michigan is a much faster runner than I am, and we had 2 really great runs this last weekend where I really pushed my comfortable pace and felt great. I feel stronger than I have in a while and while I'm still afraid of rolling hills, I feel a little more confident in my ability to make it through. I'm also pretty happy to be in double digit mile long runs! I feel so lucky to have such good BRFs (best running friends) and we've settled into a good routine - Mondays are for speed, Wednesdays we run a Mickey Mile (for my runDisney Jeff Galloway fans, it's where you run 1 mile all out to see improvements and to help you figure out a reasonable pace) and follow it with an awesome strength class, and Fridays are for hills (either on the treadmill or in the hospital parking garage ;)). We meet up with the local running club Sunday mornings at 6am for our long (slow) distance building run. I can usually convince John (and Chase, although he requires far less convincing!) to come along on a 5 mile run Tuesday and/or Thursday from our local running store with friends - so that's where his training is!
And my favorite update comes from my sister, on behalf of Eric! "Eric took a week off after a hurt back which was aggravated by a tumble down some stairs (on our vacation in South Carolina!). That tumble hurt his back more which made him walk differently which led to a fall down a few more stairs at Stone Mountain which resulted in a very swollen sprained ankle. After over compensating his other ankle started to hurt but after one trip to the chiropractor things seem to be looking up! He should be good to run this weekend :) <--it was a pretty exciting trip!
I LOVE LOVE LOVE seeing how motivated all 12 of our runners are! Want to know what else I love?!?!?! That we are over the $2000 mark in our fundraiser!
This weekend, we announced a new way for our 22q families to help us on our journey!
We'd love your help to support the Dempster Family Foundation - we're asking for you to donate and sponsor a mile for your q-tie! For a limited time, we're offering a buddy mile opportunity! Maybe the $100 is too much? Consider teaming up with a friend to co-sponsor a mile - $50 each! We're opening up 50 miles to be run as buddy miles - if you are interested, tag a 22q buddy here to ask if they want to go in with you, then click on our link (https://app.mobilecause.com/vf/22qRun) to donate, and shoot an email to werun22q@gmail.com so we know who you are sharing your mile with! smile emoticon
remember, your 22q-tie's name will be written on our van and we'll be carrying them along with us as we run their mile!
We want to include as many of you as we can as we tackle these 200+ miles. Please consider donating to the Dempster Family Foundation and giving us 200 beautiful names to carry! Your gift is tax deductible and the money we raise goes to the DFF to directly help families dealing with 22q (deletion AND duplication!).
{I feel the need to reiterate the disclaimer here again - we have all paid our own way for this race - registration and travel expenses. EVERY SINGLE PENNY goes to programs that help families and children with 22q.}
If ANYONE has ANY questions, please do not hesitate to shoot an email to werun22q@gmail.com.
Tuesday, July 7, 2015
Eric Ziegelbauer
It is my pleasure to introduce Eric Ziegelbauer. Eric is my beloved brother-in-law. I really couldn't have picked a better person to marry my sister (yep, I handpicked the guy!). When he says "family is everything," he means it.
I picked up running a few years ago after watching/cheering/chasing Katie around Disney. Most of our runs are together at Disney, because its the happiest place on Earth (and because I'm really just a big kid myself!), with my wife, mother-in-law, and all the kids in tow. When Katie asked if I would be on the team, I was excited and honored to support my family and raise awareness for my nephew. Whenever we are visiting Katie and her family (usually once a month), we go out for a nice, long run. I am excited to share this journey and be part of this team.
P.S. I would like to apologize in advance for the rain.
P.S. I would like to apologize in advance for the rain.
//
Eric and I have run more than 8 races together in the last 14 months. It rained during Expedition Everest Challenge, then it rained during Wine and Dine, then it rained during the Family 5k at WDW Marathon weekend, and then we enjoyed a nice shower during the marathon! I'm thinking we might need to run something out in California together ;)
I want to use this space to just tell you all how much Eric and my sister Jesse mean to me. They have 3 biological children of their own, but they might as well say they have 4 children the way the love and care for Chase. Literally, from his first day here on the planet, they have gone out of their way to be an exceptional aunt and uncle. I am so honored that they will all be joining us in DC - Eric as runner #3 (he has the "ragnarliest" leg of the race!), and Jesse as our support crew, holding down the hotel room fort with Caleb, Kamden, Addison, and my 22qt, Chase.
//
22q families, consider making your donation to the Dempster Family Foundation and sponsor a mile in your child's honor! We are asking that you try to fundraise a minimum of $100 for your mile. Your $100 donation provides for 1 hour of educational advocacy, helps cover costs for educational programming to teachers, parents, and medical professionals, or helps defray the costs of sending our children to Dragonfly Camp! If $100 seems daunting to you, PLEASE set up your own "Be a Fundraiser" page - you have 3 months to ask family and friends to pitch in for your mile! Put away $7.75 a week, $33 a month, or ask 10 friends for $10! There are lots of ways to raise that money, so please don't feel overwhelmed!
It is our dream to have all 206 miles run in honor of these amazing children! Your 22q hero's name will be written on our team vans! Each runner will be given 3 buttons, one for each of their legs of the journey. The buttons will have pictures of the children that particular leg is dedicated. You will be able to follow along using the hashtag #werun22q on instagram during training and during our journey from Cumberland, MD to Washington DC.
As a thank you for your donation, for every $100 donation (or fundraised amount in your name), you will receive a picture of your runner embarking on their leg of the journey that carries them on your mile!
Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!
Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!
Wednesday, July 1, 2015
Kari and Ellyot Clancy
It is hard to believe it is July 1 already! We are another month closer to our race, as most of us will be travelling to our destination 3 months from today!!
Today, I have the pleasure of introducing Kari Clancy and her son Ellyot. I think Kari might have been the first 22q friend I made on Facebook after Chase was diagnosed.
//
When we decided to put this team together, I reached out to my 22q friends on facebook. While we were trying to keep the project under wraps in case we couldn't get it off the ground, I was hoping to be able to find 12 people who were just as vested and interested in running a crazy long distance as I was. I asked Kari, who said she wasn't a runner, but that she was willing to try. I cannot tell you how impressed I am with how far she has come! She laced up her shoes right away and now only a couple of months later, has several 6 milers under her belt!
Kari is not only runner 9 (van 2), but she has also been nominated team photographer :)
//
22q families, consider making your donation to the Dempster Family Foundation and sponsor a mile in your child's honor! Your $100 donation provides for 1 hour of educational advocacy, helps cover costs for educational programming to teachers, parents, and medical professionals, or helps defray the costs of sending our children to Dragonfly Camp! If $100 seems daunting to you, PLEASE set up your own "Be a Fundraiser" page - you have 4 months to ask family and friends to pitch in for your mile! Put away $6.25 a week, $25 a month, or ask 10 friends for $10! There are lots of ways to raise that money, so please don't feel overwhelmed! It is our dream to have all 206 miles run in honor of these amazing children!Friends! we have several ways you can help! Choose an item off of our amazon wishlist (search werun22q@gmail.com), purchase a gas gift card to help us on our journey, donate $10 and pick a song for our playlist, make a donation through PayPal (email werun22q@gmail,com), or consider making a pledge to another 22q cutie's page so a mile can be sponsored in their honor.
Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!
Thursday, June 25, 2015
Ashley and Connor Bourg
(Ashley lives in the New Orleans area with her husband, Darrell, and three children, Hadley(7), Connor(4.5), & Cooper(2). She runs a statewide support group in Louisiana, which serves to connect and support families affected by 22q.)
"I was never much of a runner. In fact, I hated running, but with two small children I had to find some form of exercise that didn’t take a lot of time or I could bring the kids along. Running seemed to be the answer so I downloaded the Couch to 5K app and went on my first run. When I began, I could barely finish the 30 second intervals without being winded. Then, one day I realized I had run 5 miles nonstop. I finally felt like a runner and convinced a friend to register with me for my Disney first half marathon. Since then, I have done numerous races, always sporting my 22q gear.
Three months later, when Connor was 15 months old we noticed his delays in
development had become more significant and began our journey through early intervention. At 18 months he had his first seizure and ambulance ride. In June, he was diagnosed with a brain malformation with an unknown prognosis. Running proved to be extremely therapeutic during the months leading up to our appointment with the genetics department. Many times it brought me a sense of peace that I just can’t explain. Other times I was able to just pray, cry, or even yell out and question God as to why my baby was going through so much. What did all of this mean? Would he be okay? During this time I spent hours scouring the internet for information. I came across something called DiGeorge Syndrome and quickly dismissed it because Connor had no known heart defect, he wasn’t sick a lot, and he gained weight appropriately. None of the symptoms seemed to fit. In August of 2012, 3 months shy of Connor’s 2nd birthday, we met with our geneticist. One week later, we had a diagnosis: 22q11.2 Deletion Syndrome, most commonly known as DiGeorge Syndrome or Velo-Cardio-Facial Syndrome. We were immediately sent to a pediatric cardiologist where Connor was also diagnosed with an Atrial Septal Heart Defect. Now that I look back, I can see how Connor did have so many of those symptoms: nasal regurgitation, feeding difficulties, developmental delays, and gastrointestinal difficulty, to name a few. They were all so mild that I never put them all together as meaning anything more significant.
It has been almost three years since that day in August when our entire world shifted. Connor has had numerous evaluations, therapies, and procedures to ensure he is developing properly. He is an amazing little (momma’s) boy who loves the beach, Mickey Mouse, and all forms of transportation. If I can save one family from dealing with the fear of the unknown or feeling completely alone by bringing awareness to 22q, I will consider myself successful."
//
I was connected to Ashley through Kate on facebook. Her story is so similar to ours! I am so excited that she will be joining us on this journey - it will be so nice for all of us to share our experiences!
Ashley will be runner 2!
//
Friends! we have several ways you can help! Choose an item off of our amazon wishlist (search werun22q@gmail.com), purchase a gas gift card to help us on our journey, donate $10 and pick a song for our playlist, make a donation through PayPal (email werun22q@gmail,com), or consider making a pledge to another 22q cutie's page so a mile can be sponsored in their honor.
Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!
"I was never much of a runner. In fact, I hated running, but with two small children I had to find some form of exercise that didn’t take a lot of time or I could bring the kids along. Running seemed to be the answer so I downloaded the Couch to 5K app and went on my first run. When I began, I could barely finish the 30 second intervals without being winded. Then, one day I realized I had run 5 miles nonstop. I finally felt like a runner and convinced a friend to register with me for my Disney first half marathon. Since then, I have done numerous races, always sporting my 22q gear.
Three months later, when Connor was 15 months old we noticed his delays in
development had become more significant and began our journey through early intervention. At 18 months he had his first seizure and ambulance ride. In June, he was diagnosed with a brain malformation with an unknown prognosis. Running proved to be extremely therapeutic during the months leading up to our appointment with the genetics department. Many times it brought me a sense of peace that I just can’t explain. Other times I was able to just pray, cry, or even yell out and question God as to why my baby was going through so much. What did all of this mean? Would he be okay? During this time I spent hours scouring the internet for information. I came across something called DiGeorge Syndrome and quickly dismissed it because Connor had no known heart defect, he wasn’t sick a lot, and he gained weight appropriately. None of the symptoms seemed to fit. In August of 2012, 3 months shy of Connor’s 2nd birthday, we met with our geneticist. One week later, we had a diagnosis: 22q11.2 Deletion Syndrome, most commonly known as DiGeorge Syndrome or Velo-Cardio-Facial Syndrome. We were immediately sent to a pediatric cardiologist where Connor was also diagnosed with an Atrial Septal Heart Defect. Now that I look back, I can see how Connor did have so many of those symptoms: nasal regurgitation, feeding difficulties, developmental delays, and gastrointestinal difficulty, to name a few. They were all so mild that I never put them all together as meaning anything more significant.
It has been almost three years since that day in August when our entire world shifted. Connor has had numerous evaluations, therapies, and procedures to ensure he is developing properly. He is an amazing little (momma’s) boy who loves the beach, Mickey Mouse, and all forms of transportation. If I can save one family from dealing with the fear of the unknown or feeling completely alone by bringing awareness to 22q, I will consider myself successful."
//
I was connected to Ashley through Kate on facebook. Her story is so similar to ours! I am so excited that she will be joining us on this journey - it will be so nice for all of us to share our experiences!
Ashley will be runner 2!
//
22q families, consider making your donation to the Dempster Family Foundation and sponsor a mile in your child's honor! Your $100 donation provides for 1 hour of educational advocacy, helps cover costs for educational programming to teachers, parents, and medical professionals, or helps defray the costs of sending our children to Dragonfly Camp! If $100 seems daunting to you, PLEASE set up your own "Be a Fundraiser" page - you have 4 months to ask family and friends to pitch in for your mile! Put away $6.25 a week, $25 a month, or ask 10 friends for $10! There are lots of ways to raise that money, so please don't feel overwhelmed!
Friends! we have several ways you can help! Choose an item off of our amazon wishlist (search werun22q@gmail.com), purchase a gas gift card to help us on our journey, donate $10 and pick a song for our playlist, make a donation through PayPal (email werun22q@gmail,com), or consider making a pledge to another 22q cutie's page so a mile can be sponsored in their honor.
Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!
Sunday, June 21, 2015
John and Chase Serban
So in honor of it being Father's Day and all, today is a good day to introduce to you the sole 22q dad on our team (mostly, because he HAS to ;) ), my husband John Serban, and our son Chase.
"Just a city boy, born and raised in south Detroit. Oh wait, that's wrong. I lived the first half of my Michigan life in Dearborn and then moved to the rural area of Pinckney, before eventually moving to Florida at the age of 24. Around this time, I decided I wanted to do something in the health care field, and after putting in some volunteer hours at a hospital, I decided it was time to go back to school to be a physical therapist.
After moving to Florida, I played in a lot of community rec flag football and roller hockey leagues, but as I got older and stopped playing those, I was trying to find a way to remain active. After following Katie along on one of her marathons (as a spectator), I caught the bug. We signed up for ESPN the Weekend 5k at Walt Disney World as my first race. After a couple more short runs, I wanted to try something longer. We ventured into the 10k distance and then eventually half-marathons. This past January, I ran my first full marathon at WDW as part of the Goofy Challenge - 13.1 miles on Saturday and then 26.2 on Sunday.
As a person who loves team sports but not being familiar with Ragnar, I was introduced to the team aspect of running a relay race and thought it was a cool idea. Being able to combine the team concept while also fundraising for a cause that is now near and dear to my heart sounded even better.
As for what it means to be Chase's dad, I marvel at the opportunity to teach (as well as learn) on a daily basis the experiences I never thought I'd have, least of all enjoy, like the fun I get to have taking him to sporting events, the trips taken (via both the airlines and family "truckster"), and the love that is expressed and received, especially with the extra attention required for a child with 22q."
(I am obviously one of John's biggest fans. It has been such a joy for me to watch him transform into Chase's daddy. Before Chase came along, we were those parents. You know the ones. I was never going to breastfeed in public; we were never going to co-sleep, we were never going to let our kid scream on an airplane, he was going to eat all of his vegetables (ok, that one he does...), etc. And then Chase was here and as they say, "everything changes when you have a baby." We had some challenges that I know many of you in the 22q community faced, but that none of our friends or family had to deal with. We had to leave the hospital without our baby. I had to pump milk day and night for his 10 days in the NICU. Chase came home without a voice; we couldn't put him in a crib to sleep because we wouldn't be able to hear him if he woke. And so, without even realizing it, we adapted and changed to meet his needs. John has helped and supported me while breastfeeding Chase at the airport, on an airplane, at Disney World during a marathon, while watching hockey and minor league baseball games, restaurants, playgrounds, and during hospital stays. Six days shy of his second birthday and with a voice that carries through an auditorium, Chase still shares our bed. I can't think of a better champion for our son than John, and so, I am thankful that he not only supported my efforts into creating this team, but that he has been working behind the scenes with me to make sure we are successful! Happy Father's Day, John, and happy Father's Day to all of you 22q daddies out there who are also working tirelessly to make the lives of your children better!)
John will be runner 4, sharing the journey with the rest of van 1!
//
22q families, consider making your donation to the Dempster Family Foundation and sponsor a mile in your child's honor! Your $100 donation provides for 1 hour of educational advocacy, helps cover costs for educational programming to teachers, parents, and medical professionals, or helps defray the costs of sending our children to Dragonfly Camp! If $100 seems daunting to you, PLEASE set up your own "Be a Fundraiser" page - you have 4 months to ask family and friends to pitch in for your mile! Put away $6.25 a week, $25 a month, or ask 10 friends for $10! There are lots of ways to raise that money, so please don't feel overwhelmed!
Friends! we have several ways you can help! Choose an item off of our amazon wishlist (search werun22q@gmail.com), purchase a gas gift card to help us on our journey, donate $10 and pick a song for our playlist, make a donation through PayPal (email werun22q@gmail,com), or consider making a pledge to another 22q cutie's page so a mile can be sponsored in their honor.
Help us ensure that the Dempster Family Foundation can continue to provide the services we all depend on to help our kids!
Thank you! :)
Saturday, June 20, 2015
Our Fundraiser is NOW Live!
If you've been following along on Facebook this week, you have seen our posts! Our fundraising link, through the Dempster Family Foundation, is now live. We would like to say a BIG THANK YOU to Amy Shell, for being the first to start her personal fundraising page, and to Brian Goad, who was the FIRST to sponsor a mile along our journey to his daughter Briley! We are so thankful for your support!
I do understand that $100 seems daunting to some. Many families do not have that amount just hanging around, and I TOTALLY get it! We want to run for EVERYONE in the 22q community! There is an option on our webpage, a button that says, "Become a Fundraiser." We invite you to create your own page! Consider putting aside $6.25 a week for the next 15 weeks. Make a $25 donation every month until our race. Ask 10 friends to donate $10. Ask grandparents, cousins, aunts, uncles, neighbors, church friends. Hold a lemonade stand. Break it down into increments you CAN contribute. You don't have to have it all at one time!
The Dempster Family Foundation does so much for our families. They provide educational assistance and IEP support to our families, educational programming to parents, teachers, and medical professionals, and they send our children to Dragonfly Forest camp. They support us in enriching our children's lives. Please help us show them how much we appreciate what they do; help us make sure they are able to continue to provide these services!
Click here to donate to the Dempster Family Foundation and sponsor your mile!
I do understand that $100 seems daunting to some. Many families do not have that amount just hanging around, and I TOTALLY get it! We want to run for EVERYONE in the 22q community! There is an option on our webpage, a button that says, "Become a Fundraiser." We invite you to create your own page! Consider putting aside $6.25 a week for the next 15 weeks. Make a $25 donation every month until our race. Ask 10 friends to donate $10. Ask grandparents, cousins, aunts, uncles, neighbors, church friends. Hold a lemonade stand. Break it down into increments you CAN contribute. You don't have to have it all at one time!
The Dempster Family Foundation does so much for our families. They provide educational assistance and IEP support to our families, educational programming to parents, teachers, and medical professionals, and they send our children to Dragonfly Forest camp. They support us in enriching our children's lives. Please help us show them how much we appreciate what they do; help us make sure they are able to continue to provide these services!
"You don't have to be great to start, but you have to start to be great" -Zig Ziglar
Click here to donate to the Dempster Family Foundation and sponsor your mile!
Monday, June 15, 2015
Kate and Aubrey Wagner
It is my pleasure to introduce to you Kate Wagner and her daughter Aubrey today. Kate and I became Facebook/Instagram friends when we realized we both had a love for running and a child with 22q. After I watched @teamsparkle and their #ragnar4rett, I reached out to Kate with my crazy idea to try our hand at a fundraising race. She did not think it was so crazy after all, and I had my first runner on-board.
"I first started running a little over a year ago. I wanted to run a 5k, not walk it, and I couldn't even run a mile. I slowly worked my way up to run my first race on July 4, 2014. Independence Day is our favorite family holiday - we always have a huge party - so I figured I could run the race and celebrate my first 5k afterwards! That was all it took to get bit by the running bug. I was hooked and started looking for a half marathon next. I wasn't sure if I would be able to do it, wasn't sure if I'd be able to find the time to train, but I saw there was a women's themed half here in Cincinnati having their inaugural race in October, which gave me the perfect training time. I jumped in, feet first, and went for it. I had my doubts, but thinking of all of the challenges Aubrey has overcome really pulled me through. I think of her often during my long runs. She's only 3 and a half, but has shown so much strength and overcome quite a bit in her short life that I remind myself that a 1/2 marathon is easy in comparison.
Aubrey was born at full term, no complications, looking just perfect. When she was 2 days old, she still had a heart murmur, so the hospital pediatrician sent us to Cincinnati Children's just as a precaution. She assured us that it was common to do so, and it usually amounts to nothing. An "it's better to be safe than sorry" kind of thing. It was then that they did an echocardiogram and discovered a large VSD (hole in her heart) that would require open heart surgery in 6-9 months, once she had gained some weight. I was heartbroken for my little girl. Andy and I were first-time parents and scared to death. We couldn't believe this was happening.
She was followed regularly by cardiology, and at about 10 weeks old, her cardiologist said she had pretty much stopped growing. We could either give her a feeding tube, or go for surgery soon. We wanted to get this nightmare behind us, so we were happy to move forward with surgery sooner rather than later. On December 22, 2011, Aubrey had her open heart surgery. The surgeon came in afterwards; he told us everything went well, but that she was missing her thymus, which could indicate a genetic condition called DiGeorge Syndrome. We sort of shrugged it off, just happy that her surgery was successful and that we would be reunited soon. It was during her recovery that we met with the geneticist who told us more about DiGeorge/22q. Aubrey had been doing so well - she couldn't have this syndrome they were talking about. She was right on track developmentally; her only issue was her heart defect. So when the test came back positive, I have to say that we were all a little surprised. But, the geneticist told us there was a spectrum that kids with 22q can fall on, that there were plenty of people who lead normal lives with maybe some learning disabilities of speech issues.
We've let Aubrey lead the way when it comes to her diagnosis. We often joke that no one has told Aubrey that she has 22q - she never got the memo. She goes about life like any other typical 3.5 year old - full of joy, laughter, stubbornness, and spunk. She loves playing with her friends, Dora, riding her ATV, riding horses, eating spaghetti, and Reds baseball."
Kate will be runner 7, kicking off Van 2's Ragnar experience.
//
There are several ways you can help us #werun22q. If you have a child with 22q, please continue to follow here and at the Dempster Family Foundation for your chance to sponsor a mile for your 22q cutie. For friends and family interested in helping us make this journey possible, we have established an Amazon wishlist (to make your donation go even further, try shopping through Amazon Smile and searching for the Dempster Family Foundation) in order to purchase needed items. We are also collecting gas gift cards to use along the way. Lastly, you can donate directly through PayPal - werun22q@gmail.com.
Thank you!
 |
| Kate and Aubrey Wagner // #werun22q |
"I first started running a little over a year ago. I wanted to run a 5k, not walk it, and I couldn't even run a mile. I slowly worked my way up to run my first race on July 4, 2014. Independence Day is our favorite family holiday - we always have a huge party - so I figured I could run the race and celebrate my first 5k afterwards! That was all it took to get bit by the running bug. I was hooked and started looking for a half marathon next. I wasn't sure if I would be able to do it, wasn't sure if I'd be able to find the time to train, but I saw there was a women's themed half here in Cincinnati having their inaugural race in October, which gave me the perfect training time. I jumped in, feet first, and went for it. I had my doubts, but thinking of all of the challenges Aubrey has overcome really pulled me through. I think of her often during my long runs. She's only 3 and a half, but has shown so much strength and overcome quite a bit in her short life that I remind myself that a 1/2 marathon is easy in comparison.
Aubrey was born at full term, no complications, looking just perfect. When she was 2 days old, she still had a heart murmur, so the hospital pediatrician sent us to Cincinnati Children's just as a precaution. She assured us that it was common to do so, and it usually amounts to nothing. An "it's better to be safe than sorry" kind of thing. It was then that they did an echocardiogram and discovered a large VSD (hole in her heart) that would require open heart surgery in 6-9 months, once she had gained some weight. I was heartbroken for my little girl. Andy and I were first-time parents and scared to death. We couldn't believe this was happening.
She was followed regularly by cardiology, and at about 10 weeks old, her cardiologist said she had pretty much stopped growing. We could either give her a feeding tube, or go for surgery soon. We wanted to get this nightmare behind us, so we were happy to move forward with surgery sooner rather than later. On December 22, 2011, Aubrey had her open heart surgery. The surgeon came in afterwards; he told us everything went well, but that she was missing her thymus, which could indicate a genetic condition called DiGeorge Syndrome. We sort of shrugged it off, just happy that her surgery was successful and that we would be reunited soon. It was during her recovery that we met with the geneticist who told us more about DiGeorge/22q. Aubrey had been doing so well - she couldn't have this syndrome they were talking about. She was right on track developmentally; her only issue was her heart defect. So when the test came back positive, I have to say that we were all a little surprised. But, the geneticist told us there was a spectrum that kids with 22q can fall on, that there were plenty of people who lead normal lives with maybe some learning disabilities of speech issues.
We've let Aubrey lead the way when it comes to her diagnosis. We often joke that no one has told Aubrey that she has 22q - she never got the memo. She goes about life like any other typical 3.5 year old - full of joy, laughter, stubbornness, and spunk. She loves playing with her friends, Dora, riding her ATV, riding horses, eating spaghetti, and Reds baseball."
Kate will be runner 7, kicking off Van 2's Ragnar experience.
//
There are several ways you can help us #werun22q. If you have a child with 22q, please continue to follow here and at the Dempster Family Foundation for your chance to sponsor a mile for your 22q cutie. For friends and family interested in helping us make this journey possible, we have established an Amazon wishlist (to make your donation go even further, try shopping through Amazon Smile and searching for the Dempster Family Foundation) in order to purchase needed items. We are also collecting gas gift cards to use along the way. Lastly, you can donate directly through PayPal - werun22q@gmail.com.
Thank you!
Monday, June 1, 2015
#WeRun22q
12 (mostly) strangers, connected by the internet, picked to live in a van for 36 hours and run 200+ miles...
Sounds like the tagline of the Real World, right?
On October 2-3, 2015, our team of 12 runners will be tackling the Ragnar Relay Washington DC, a relay race from Cumberland, Maryland to Washington DC. We all have something in common - we either have or know a child with 22q11.2 deletion syndrome.
The race works like this: Each participant runs three times, with each leg ranging between 3-11 miles and varying in difficulty. While one person is running, the rest of the team is on support duty in the race van. Our goal is simple. Run day and night to raise awareness for VCFS/DiGeorge Syndrome/22q and raise funds for the Dempster Family Foundation.
We run:
- because at some point, we found out our children had a chromosomal abnormality none of us had even heard of prior to diagnosis
- because in addition to being mothers, fathers, aunts, uncles, and friends, we have had to be warriors, advocates, teachers, occupational therapists, physical therapists, and speech therapists
- because our children have had surgeries to correct palatal defects and congenital heart defects, remove laryngeal webs, and place feeding tubes and trachs
- because our children require help from therapists to perform tasks other parents and children take for granted
- because we are inspired by those who cannot
- because 22q and those affected deserve awareness and recognition
- because we love our 22q cuties, we are powered by their strength, courage, and warrior spirits
- because TOGETHER we can make a difference
We will be raising money and awareness for the Dempster Family Foundation; the DFF helps fund educational programs for medical professionals, teachers, and parents. The DFF also helps send our children to summer camps where they can have fun despite their medical challenges! Our goal is to have each of our 206 miles sponsored by families and dedicated to their 22q cutie! EVERY penny of our mile sponsorship program through the Dempster Family Foundation stays with the foundation to help families and children like ours.
We will be holding a separate mini-fundraiser to assist us in gathering all of the equipment we need to complete this race (vans, reflective gear, water, food, running gear). We are each paying our own travel expenses to the Maryland/DC area and most of us are parents who have incurred major medical bills in caring for our children. Many companies have offered us discounted prices on the gear we require, which helps greatly, but we are still in need of financial assistance to pull this off!
Over the next few weeks, we'll be introducing the members of our team, discussing our preparation and training, and giving you a glimpse into the 22q world by sharing our stories! We hope you'll stop by soon!
Subscribe to:
Comments (Atom)