Meet Gavin & Mathew

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Gavin & Mathew-ages 12 & 7 Diagnosis-6q21, 22.1 Chromosome Deletions U.S.A.

 

Gavin (far right) was born 6 weeks early due to preeclampsia. When he was in NICU, they discovered that part of his intestine was damaged and that he had a small airway. Gavin had many difficulties including eating. It took an hour to feed him and then an additional hour to get the bubbles out. By 4 months, he wasn't able to hold his head up or gain weight, so he was in a high risk clinic. Gavin was in an early intervention program where he was seeing a physical therapist and occupational therapist. At that time, Gavin was diagnosed with ocular motor apraxia. He was also diagnosed with cerebral palsy and spinal bifida. He was fitted for glasses, which helped him a lot. At 10 months, Gavin was hospitalized with pneumonia and later came home on oxygen. He was 14 months the first time he sat up and 16 months when he finally crawled.

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Gavin finally walked independently when he was five years old. He began to make some strides in school, thanks to dedicated teachers. As he has become more mobile, his health has improved though he occasionally has asthma attacks. He is learning to dress himself and can feed himself. Gavin is pretty independent. Beyond MRIs, EEGs, and FISH testing, there hasn’t been many test done. We take one day at a time with little or no answers because this is so new. He is a happy easy going little boy that wants to help. He absolutely loves people. and finding friends.

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Mathew, Gavin's younger brother also has 6q21, 22.1 chromosome deletion. He does not sleep well. Even though we don’t know why, I think it's related to his inability to stop moving. He is very healthy happy little boy. He hasn't had as many issues as his older brother though they share the same deletion. Matt also has a seizure disorder and spinal bifida. He is non communicative. By nine months, they labeled him failure to thrive. We finally were able to fix the problem. He sat, and crawled normally, though he was 3 before he walked independently. He is such a happy boy who loves hugs and friends, and he has a mischievous streak a mile wide.

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