The Garcia Family (Foundation Directors)
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When Lindsey and Ryan found out at their 20 week ultrasound that their child was going to be born with 22q11.2 deletion syndrome, everything changed in their world. They were devastated at first with the news, but they embraced the diagnosis and their new community around them and have been active supporters ever since. It was a blessing having an early diagnosis, as it gave them time to prepare and research. Being a teacher, Lindsey was used to planning and preparing, but nothing could truly prepare them for the arrival of their son, Cohen. They prepared for open heart surgery at birth and luckily that day never came; however, they spent many days in the hospital. For his first 17 weeks of life, Cohen was in and out of the hospital trying to resolve early infant complications with feeding, reflux, and sleep apnea. Finally, at about 5 months of age, he was home for good. Looking back, that was definitely one of the greatest challenges the Garcia family has had to overcome with 22q. Having a child with this syndrome has definitely been an uphill battle, but as they see his progress and quality of life improve exponentially, they wouldn't change their journey or have it any other way. Having a child with 22q has taught them patience, acceptance, perseverance, and courage. Cohen has taught their entire family to truly be happy for what they have and it has been a humbling experience for all of them. They have always been honest and open about their son's diagnosis as a way to connect, educate, and support other families in the community. The community gave them comfort and guidance when they first learned of Cohen's diagnosis, and so it is important for them to pay it forward to others going through similar experiences.
Working closely with the Dempster Family Foundation in Chicago, the Garcias always did everything possible to stay connected and help support raising awareness for 22q. When the foundation closed, they felt like a piece of them went missing. This was a foundation that they were connected with since diagnosis and a place they always felt comfort in turning to. Both Lindsey and Ryan didn't even hesitate in thinking about opening their own family foundation. It was a scary thought, but it seemed only natural to jump in the driver seat and take off! Along with fellow 22q mom, Katie Chiet, the Garcias are making it their mission to raise awareness for 22q while helping connect, support, and provide as much information to families as possible.