Teddy Bohon

Teddy is a typical, energetic, amazing and mighty three year old. He loves people, loves being the center of attention, and has the most contagious laugh. He was diagnosed with 22q Deletion at one week old and has a wonderful team of Doctors, Nurses, Therapists, Teachers, Grandparents, and Family behind him 110%.

We found out the day Teddy was born that he has a heart defect called Tetralogy of Fallot. (TOF) He had 2 heart surgeries called the BT Shunt and Tetralogy Repair. His pulmonary valve is still leaking at 50% and we hope he makes it to age 10 before we have to do another open heart surgery. Since 1 in 75 children born with TOF have 22q Deletion, he was automatically tested. My husband and I both tested negative and we questioned what causes 22q Deletion.

We quickly learned that 22q affects each child differently and gained hope that with the right healthcare team in place, he would overcome the many hurdles of 22q. Teddy has a team of twelve doctors and therapists. The first hurdle was to fix his heart. Once this was done, Teddy started making progress. He outgrew his severe reflux and pulled out the feeding tube. He outgrew his immune deficiency and was able to receive all of his vaccinations. (Even the live ones) He crawled late, but he walked at 18 months. He gradually started smiling, then laughing, and then making some sounds.

Teddy was very quiet as a baby and didn’t start making noises until his second birthday. He is very delayed in speech, but we have been on top of it since he turned 2 with therapists and a special preschool. We are VERY fortunate for the early diagnosis and blessed with absolute top notch therapists and doctors in the St. Louis area. We are also fortunate to have a strong support group in Missouri, The Ryan Dempster Foundation, and the International 22q Foundation to educate us and allow us to advocate for our son. This support continues to bring us hope that Teddy will live a long, successful, and happy life.

Teddy will attend an early childhood special education classroom next school year. He will receive PT, OT, Speech, and Adaptive Behavior therapy. He currently attends a full day preschool where he fits right in with the typical 2 year old class. Teddy LOVES it!!!

The best advice we ever received as 22q parents was to take it one step at a time. “You have to get over the hurdle directly in front of you if you want the opportunity to attempt the next hurdle.” We have learned a lot over the last three years, met some brilliant and exceptional people, and gained a wonderful extended 22q family.

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