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! 

"Hi everyone! I'm originally from South Jersey, but thanks to the military (and a 22q diagnosis), our family has moved five times in the past four years! My husband, Alex, is currently deployed. I started running about a month after he left, so I've only been running for about 3 1/2 months now. I needed to do something for myself and needed an outlet from all of the stress I have between worrying about a deployed husband and taking care of my 22q daughter, Scarlett, and my one year old, Harper.

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!"

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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!  

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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!

CLICK HERE TO DONATE TO THE DEMPSTER FAMILY FOUNDATION IN HONOR OF #werun22q

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.

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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!

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