Turner is our forever baby born in 2002. He has Trisomy 5, which is a Chromosome abnormality that for Turner affects his 4th and 5th chromosomes. At the time of his birth, he was 1 of only 20 people in the nation with this disorder. There had never been any studies for Trisomy 5 so there was not a lot of information to guide us as parents on his journey.
We had a planned birth at 39 weeks in Dallas, TX and we spent the next 30 days after birth in the NICU. Turner had bilateral clubbed feet, and required oxygen and an NG tube since he some trouble feeding due to his respiratory status. He was happy and doing well but gaining weight slowly. We were sent home with oxygen, a halter monitor, apnea monitor, feeding equipment, breathing treatments and the 1st set of casts on his feet. It was a bit overwhelming to say the least, even for an experienced mom of four!
Over the next several months we settled into our new normal of doctor appointments and test after test trying to figure out why Turner was still requiring oxygen. But through it all, Turner was such a happy guy. He played and cooed as any baby would and always had a smile on his sweet face. Although he was slow in meeting his milestones, he was proving to be a smart little one. At 4 months Turner would wave hi and bye, hold his arms up to be picked up, and was eating like a champ!
When Turner was 10 months old, by the grace of God we landed in Texas Children’s Hospital in Houston where after many tests, studies, biopsies and a g-tube placement, we finally got some answers. The doctors discovered that the PDA valve in Turner’s heart had never closed and was turned in a direction so that it was dumping blood into his lungs, causing areas to collapse. A heart stent was placed, and healing began. By 12 months old Turner was completely off oxygen except for the occasional respiratory illness. But by this time he had started having Myoclonic epilepsy, which looks like a startle reflex, and he was still not able to hold his own head up or sit up on his own.
For the next 2 years Turner worked very hard with physical therapy, occupational therapy, and speech therapy. By the age of 3 he finally mastered the art of holding his head up and sitting on his own. He started school, which he enjoyed immensely and was very popular with his peers! By the age of 4 Turner was walking with his bilateral club feet, which we were finally able to repair at the age of 9 years old. During the next several years Turner continued to persevere. Though he developed scoliosis, he was able to learn to crawl, walk with assistance, and communicate with an assistive device.
Today, Turner loves to watch Cops and Wheel of Fortune. Despite his 15 major surgeries, he progresses every day. He is an inspiration to everyone around him. Through everything, Turner has remained a happy and loving child. Now at 19 years old, he’s defied all odds.
I’d like to give a special thank you to Apple HMS for going above and beyond over the last 10 years!
“Sometimes real superheroes live in the hearts of small children fighting big battles.” -Anonymous
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