DANNY, ANNA AND MOMRetrun to 22q Stories
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I have a long and detailed story so I’ll try and keep it to the point.
I had Danny in 199l5; he spent 31/2 long weeks in NICU couldn’t eat and swallow without choking or turning blue. He was transferred to Christ Hospital in Oaklawn after spending two weeks in NICU at Central Dupage Hospital in Winfield.
Dr. Jeanette Israel diagnosed him with Di George Syndrome and then I was diagnosed with the syndrome. After many months with 16 trips to the ER for stopping breathing Danny had, at 2 1/2 years old, tracheal reconstruction. He was in an induced coma for three weeks with a trach tube. From when he was born until about 10 he had undergone several rounds of therapy speech, OT, PT and vision therapy. Now Danny’s main issue is low T-Cell function. We see immunology every three months. We were told at birth Danny has no thymus gland, born with 70 percent restricted airway, and right aortic arch.
Anastasia was born in 2002. She also has right aortic arch, 60 percent restricted airway, and no thymus gland. She had gone through years of therapy also speech, OT, PT, and vision therapy for amblioplia. Anastasia has had 13-plus surgeries. She wasn’t speaking and at one time we did sign language until she had her VPI repair.
Both children have come a long way; we still have out struggles but overall the problems diminish as they get older. They went from not being able to walk and having had SMO and AFO orthotics. At one point Anastasia used a walker to be able to run and play.
We’d gone from not being able to breath or talk to diminished amounts of therapy over the years. Both children have a standard IEP in place at school. Danny is in high school and Anastasia is in second grade.
I had a 20 member staff meeting with the head department of special ed and got Anna approved two years ago for a 1-1 aid and both kids get home tutoring when ill. They recieve therapy in school now. Since they have overcome many obstacles I had a chance to start getting some diagnosis for myself. I had just began to see an immunologist in 2008; my main issue is muscle degeneration and low T Cell function. We all three have continuing life long obstacles but they are all managable and we are okay… It’s a rough road but eventually all the pieces come together.