Super Cooper Battles Rare CHARGE Syndrome With His Family By His Side

 

Allison McElvin had a healthy pregnancy and all of her ultrasounds went well, so no one suspected anything about her little baby Cooper.

Even when she had little Cooper three weeks early on February 18th 2018, he was a healthy weight and at first, everything was presumed to be great. Not long after the birth however, her medical team immediately knew something was wrong.

Allison, the mother, was not even able to hold her baby. It was not until the next day that she was able to hold her baby Cooper for ten minutes and then he was flown to Norton Children’s Hospital.

Cooper was diagnosed with CHARGE syndrome, a very rare disease with only 1 out of every 10,000 babies being born with it. CHARGE syndrome is a genetic syndrome that has distinctive medical and physical difficulties.

Babies with CHARGE syndrome are often born with life threatening birth defects. They usually have many surgeries and treatments. They often have swallowing and breathing problems as well as vision loss, hearing loss, balance problems, and developmental delays.

However, children born with CHARGE syndrome usually go on to live their full life expectancies and surpass many of their diagnosis’ expectations.

Super Cooper, as his family calls him with affection, has been declared deaf and blind. He had a medical team of 16 doctors including clinicians, physical and occupational therapists working with him in the first few weeks of his life as well as many surgeries and many more to come.

Super Cooper does not have a thymus, which is essential for a healthy immune system So Cooper is hoping to be able to get a thymus transplant. Duke University is the only medical institution in the country that has a transplant program for this organ and his family is hoping the waiting list is not too extensive.

Cooper’s eyesight is slowly improving-he can now see and track things that are held close to his face.

He smiles now, and lives with his family who has reconstructed the house to ensure that very little outside air and germs get into the house.

The parents say that Cooper has actually made them closer as a couple. “We don’t take the little things for granted,” they say.

Read more about Cooper’s journey here.


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