JACKSONVILLE, Fla. – Rare Disease Day is Sunday to help raise awareness about rare diseases and how they affect millions of people around the world and in Florida.
Elijah Williams, 4, lives in Jacksonville with Shwachman Diamond Syndrome, or SDS.
“He was genetically confirmed in about 15 months,” said his father William Williams.
SDS is a rare genetic disorder. Williams said it weakens Elijah’s immune system and makes it difficult for him to ingest or digest food. He takes a pill with his meals every day.
“We’re lucky if it has a solid like chicken nuggets,” explained Williams. “We’re lucky if he eats that once a day with his protein drinks. He eats 90 percent protein drinks because he just doesn’t want to eat. You could offer him cake and we would be blessed if he eats it. “
As Elijah gets older, there is a possibility he will need a bone marrow transplant, according to Williams.
“You can’t say there’s likely to be a need for one, but it certainly is possible,” said Williams. “Nobody can give us the statistics on it because the statistics are worthless when it comes to this small population.”
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So the family said they are proactive in trying to add IVF to their family.
“Through IVF, it’s possible to look for a bone marrow match in those fertilized eggs and say, ‘Okay, this is a match,” Williams explained.
But after the trial began, the family ran into a roadblock.
“Initially, we were told by the fertilizer company and the insurance company that we were going to cover so much of it, and we recently found out after already starting the process that the insurance doesn’t cover any of it and it will exceed $ 20,000,” said Williams.
To help out, the Williams set up a GoFundMe page.
“It’s supposed to help him have a sibling, and we want another child anyway, a sibling who is not just a brother or sister, but also a bone marrow game for him. If he ever needs it, he can get it.” said Williams.
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Due to SDS, Williams says, Elijah gets a full blood test every two months and a bone marrow biopsy once a year.
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