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."

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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!

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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!

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!

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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! :)

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!

"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!

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.

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.

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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!

#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!