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Andalusia baby suffers from rare disease that turns soft tissue into bone

When Andalusia native Kolt Watson was born, the doctor’s assumed he was born with an abnormality in his toes, but what started as an abnormality changed drastically when he was diagnosed with Fibrodysplasia ossificans progressiva (FOP) when he was three months old.

FOP is a disorder in which skeletal muscle and connective tissue, such as tendons and ligaments, are gradually replaced by bone.

“He was born with what they call the FOP toes, but we thought that it was just a hammertoe or something like that at the time,” Holt’s mother Kelly Morgan said. “When he had his two-month shots an extra bone had grown on the muscle on his femur. That was when everything started going one and one together. He was almost four months old when we actually got the diagnosis for it.”

Once the parents received the news, a sense of fear set in.

“We really didn’t know what would happen,” Morgan said. “We were scared. We already did some research on it, because our nurse practitioner at Covington Pediatrics, Christyl Hines, actually gave us the possible diagnosis before we were even in Birmingham. We were on our way to the emergency department in Birmingham and she called letting us know that FOP could be a possibility. She didn’t want us to be caught blind-sighted by us. We, of course, looked up the life expectancy immediately and it said 40 years. Just putting a life expectancy on somebody is tough.”

To look at Watson; Morgan said people wouldn’t even notice.

“He is such a happy baby and that helps our hearts every day,” Morgan said. “When I had my daughter I could do anything and pick her up however I wanted to, but with him, I have to be careful because of the flare-ups. It makes a huge difference from kid to kid.”

FOP is almost always caused by a mutation at the same place in the ACVR1 gene and is inherited in an autosomal dominant manner. This condition occurs in about 1 in 1,600,000 newborns and about 800 people worldwide are known to have FOP.

As far as the future goes, the family is taking it day by day.

“He is a little behind on the growth curve, but he is definitely healthy,” Morgan said. “He is a solid 27 pounds at a year old. He has really just started rolling over and he can really only say ‘dada’ and ‘momma’. He can’t sit up and he can’t scoot or crawl. We just have to be so careful. We do take him to occupational therapy. We just don’t know. We take it day by day and hope for the best.”

Some things to describe Watson, Morgan said, would be that he is happy, he loves his momma and his family is his pride and joy.

“He can’t really do anything much right now, but as long as he can see one of us he is happy,” Morgan said. “They said the FOP causes severe anxiety and depression because they are different and I think he does get a little separation anxiety. The main thing is that people just don’t know the severity of this disease because nobody has ever heard of it. He is just a happy baby.”

Since no baby in Alabama has ever been diagnosed with this disease, Morgan is worried people won’t donate to the International Fibrodysplasia Ossificans Progressiva Association.

“They just don’t know about this disease because no one close to them or anywhere around them have had it,” Morgan said. “It’s not just about the money, because they are trying so desperately to find a cure for it.”

Morgan said the worst part of everything is the future.

“They call it the Stone Man’s disease because eventually they completely lose mobility,” Morgan said. “I am just worried about the future, what it’s going to be, will he ever be able to walk, will he always be in some type of wheelchair.”

The family commends Covington Pediatrics Nurse Practitioner Christyl Hines for being the only medical professional they saw that could figure the disease out.

“We have been to Dothan, Birmingham, everywhere and they did not know what it was,” Morgan said. “That is why I am sold on Covington Pediatrics. They have gone above and beyond for this child. For Christyl to have the intelligence to find something and tell us and be right about something that is so rare, it is amazing. Even UAB said they had never seen it before. We had one neurologist that saw a case 15 years ago. His FOP specialist is in Pennsylvania. He is the only one in the United States.”

Though the disease is rare and can be trying at some times, Morgan wants people to know that there is hope.

“They are different and rare, of course, but they are still babies,” Morgan said. “They are still a blessing from God that they are still here and that they are OK. It doesn’t change them as a human. He is still perfect in my eyes.”

Both Morgan and her husband Keith Watson were both born and reared in Andalusia. Kolt’s father, Keith works for the Andalusia Utilities Department.

For those interested in donating to IFOPA, visit ifopa.org.

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