Meet Cohen - 22q11.2 Deletion Syndrome

Meet Cohen - 22q11.2 Deletion Syndrome

Meet Cohen — a young boy born with 22q11.2 Deletion Syndrome. His mom, Lindsey (Executive Director of the 22q Family Foundation), shares Cohen's story. 


What was the birth of Cohen like?

My pregnancy was a normal one for the most part leading up to my 20 week anatomy ultrasound. I had no morning sickness, loved being pregnant, and had the normal cravings.

After finding out my son Cohen would be born with 22q11.2 Deletion Syndrome, my world stopped. But the knowledge did help us to be better prepared and we sure were prepared in the delivery room! After arrival by an ambulance, at 37 weeks and 2 days, Cohen came into this world on November 29, 2013.


Tell us about Cohen's diagnosis

The ultrasound tech had noticed a rather large heart defect (TOF, which turned out to be a small VSD) and some fluid on my baby's kidney. After a whirlwind of doctor appointments that day, we decided to go ahead with an amnio to determine what genetic abnormalities our son had. I am a planner and figured more information was better than going blind into the remainder of my pregnancy.

After finding out our son Cohen would be born with 22q11.2 Deletion Syndrome, our world stopped. My husband and I sat on the couch together and cried for the remainder of that day. We cried because we were worried about how this news would affect our daughter. We had a 2 year old at home and we had no clue how the needs of this new baby would affect her every day life. We cried at losing the "thought" of having a healthy baby. We cried at the fear of what this meant for his success in life as he grew and developed. But then something happened. After a google search, my husband found a website of a foundation, The Dempster Family Foundation, that was dedicated to supporting families that had children with 22q. And it just so happened, being a sports buff, he knew the man that was behind this foundation.

Ryan Dempster, a professional baseball pitcher for the Boston Red Socks and Chicago Cubs had a child born with this syndrome a few years before ours and they lived in Chicago as well. At that moment, he looked at me and said, "It's going to be ok. If Ryan Dempster has a child with this, we can get through this too." That moment will still be one of the most pivotal moments for us, as we decided then and there to take the bull by the horns and didn't look back. We did everything we could to immerse ourselves in this new community that found us. We reached out to other families to try to plan for our new special baby that would be arriving soon. We attended every event that the Dempster Family Foundation held and also helped as much as possible to fundraise for them as well.

This was our "new family" and we wanted to do everything to support it. My husband Ryan created 22q socks and worked with a local brewery to create a special 22q brew that was sold at local liquor stores throughout Chicago. Any opportunity we could, we took it upon ourselves to go the distance and give back to this incredible foundation that was doing so much for families like ours.


What are 10 fun facts about Cohen?

1. Cohen is the most loving child I have ever met. He tells me, "You're the best mom ever" or "I love you mommy" at least 5x/day.

2. Cohen is very athletic. He learned to hit a ball from an overhanded pitch from my husband by the age of 3 (mind you he still had a feeding tube and some major health issues at this time).

3. Cohen's smile lights up the room.

4. Cohen learned how to ride his balance bike by age 4 and was riding a pedal bike by age 5.

5. Cohen had a feeding tube for his first 4 years of life, but now you could never tell with how many chicken nuggets he can take down in one meal!

6. Cohen has a very high pain tolerance. When he was a baby he was known to smile at the nurse while she gave him an IV.

7. Cohen gets abnormally high fevers when he does have a fever. He used to get fevers ranging from 103-105 during teething times.

8. Cohen accomplishes anything he puts his mind to. It may take him a bit longer, but he will get there.

9. Cohen is a sports-obsessed fan. He has almost every team logo memorized for all major sports teams and even knows some of the "home-run songs" for the MLB teams.

10. Cohen is the loudest kid you'll ever meet. Not sure if it's due to his minor hearing loss, but he definitely will never get lost in a crowd.


What truly amazes you about Cohen?

Cohen amazes me every day. When he was little I was amazed by the mini-milestones that he would accomplish that seemed so innate and easy for other neurotypical babies (rolling over, talking, eating, and even drinking from a cup). Many of these milestones happened years down the road for Cohen, and when they did they seemed so much bigger and amazing.

He inspires me because even though he has been through so much in his little life, he is so resilient. After going under anesthesia at least 14 times in his short 7 years of life, having 10 surgeries, weekly therapies, and all the challenges that face him, he always does it with a smile on his face and is so much stronger than I'll ever be able to give him credit for.


Tell us about Cohen...

Cohen is very much like a typical 7 year old. He likes to play with monster trucks, all sports he can get his hands on, and bug his sister. He needs reminders to brush his teeth and to clean his room up. He loves making new friends, going to the park, and having dance parties at home with his family.

Cohen is also very different from a typical 7 year old. He struggles with anxiety and often times certain sounds or happy celebratory yells at the t.v. (i.e. from his dad during a football game) are often triggers for him and he gets overwhelmed. He also has huge separation anxiety from me and it is challenging to get him to go into school, (pre-covid days of course). He is delayed with his development. Cohen usually is drawn to playing with kids a few years younger than him.

He struggles with math. Math concepts can be there one day, and gone the next. He tends to need repetitive direct instruction to get concepts to stick, and even then many times they are not deeply understood. With everything that Cohen does, it requires so much more concentration, determination, and persistence to get the same results. But those are also some amazing qualities I love about him. He is our little engine that could. He never gives up!


What's it like to be a parent of a child with disabilities?

I always knew I would have a unique or "special" child but not to this degree. Being a teacher, I have a special place for children who learn differently. Being a special needs parent has changed me for the better in so many ways. I was so worried after first getting his diagnosis as far as how it would affect my daughter, our family, and myself as a mother. But his diagnosis has opened up my eyes to a world I didn't really know existed. It is challenging and many times an uphill battle to advocate for him both in the medical world and school environment. Often times, I feel like I'm speaking "a different language."

Having a child with 22q is often a double-edged sword. People that meet Cohen think he looks and is very similar to a typical child, and in many ways he is. But in many ways he has invisible differences and his internal struggles go unnoticed. It's exhausting sometimes to have to educate and advocate for him, but I know that my story, his story, and my advocacy for him will continue to help families in the future get the support and resources they need and deserve.


What advice do you have?

First of all, congratulations! You welcomed another life into this world and that's amazing. Looking back, unlike when we had our daughter, we didn't get told "Congratulations" often, because it was a bittersweet situation at the time. I can still remember one of our nurses congratulating me in the hospital, and it evoked so much emotion for me. At the time we had been in the hospital for weeks, and had barely been able to enjoy this new baby. He was attached to so many monitors, cords, and was barely hanging on. But she was right, we had something to celebrate. He was here, he was our newest member of our family, and he was something to celebrate.

Little did we know how much we had to celebrate as the years came. Another piece of advice I wish that someone told me is to enjoy your child as you would any other child. Often times, as a parent of a child with special needs, you get bogged down with the amount of extra care, support, therapies, doctors appointments, you name it. But they are still children and sometimes just NEED to be kids.


What misconceptions would you like to address?

I think for the most part having a 22q diagnosis is challenging because in many ways individuals with 22q look and act similar. There are many invisible differences with this syndrome which include but are not limited to: anxiety, learning differences (they really struggle with math as a whole, reading comprehension to name a few), executive functioning skills, and so much more.


What has Cohen taught you?

Cohen has taught me so much. He has taught me resiliency. He has taught me to live for each day. He has taught me to not sweat the small stuff.


What do you wish...

I wish for a future where all individuals are accepted and valued for what they bring to the table. We don't know what the future lies for Cohen, but we know what he has planned for the future. Tapping into the unique abilities of these individuals and finding their strengths and successes can help all of society grow to understand that we are all unique and special in our own way. And we all bring value to life.

When you shop to support The 22q Family Foundation, they get 70% of the profits from every sale! The 22q Family Foundation helps support families and individuals living with 22q11.2 deletion syndrome.



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