Henry
TrachKid Profile
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Henry was born on June 9, 1998 with mild complications but otherwise appearing to be a happy healthy baby. He seemed to develop fairly normal, he crawled, sat up, started speaking single words, walked, could name animals and other objects. When he was about 18 months old I began to notice he seemed to be loosing some of these abilities. I began feeling that something was wrong, but his doctor assured me that he was fine and I was just over reacting and our family thought I was just looking for attention. I began searching for answers and received many generic or wrong answers to what was wrong with my baby. He was continuing to fall further behind developmentally and seemed to be getting more clumsy. One doctor insisted he was fine and I had Munchhausen by proxy syndrome. After finding a doctor that took me seriously, we began a legitimate search for what was causing my boy to become aggressive, developmentally delayed, affecting his gross and fine motor skills and by this time causing seizures. After nearly 5 years, 2 liver biopsies, a skin biopsy, a muscle biopsy, several blood and urine tests as well as multiple MRI's, CAT scans, ultrasounds, and some tests I cant begin to remember they told us the terrible and scary news that my boy had a rare terminal disease called San Fillippo Syndrome Type A. They informed us that my daughters had a 50% chance of inheriting the disease also. Fortunately neither of my daugters inherited the disease. Unfortunately Henry has continued to decline. He now is immobile. He has severe atrophy and contractures. He recieves all of his nutrition via a GJ Tube. He has had chronic pulminary infections and requeired a lot of invasive care due to this. He recently had a Trach placed and this has reduced the amount of time he has spent in the hospital! We thank God for everyday we have with him! He is the light of my life and has such a beautiful joy inspite of his situation. He smiles all the time and loves his family and friends in such an amazing way.
History
- Blog
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- Member for
- 1 year 48 weeks
Location
- Country
- United States
- State/Province
- Kansas
