ROMULUS, Mich. – A Romulus family is dealing with a devastating diagnosis for their baby boy.
Cameron Justice, a 9-month-old boy, has a genetic disorder so rare that less than a dozen people worldwide are believed to have it. The diagnosis has so many unknowns because so few people have it.
Doctors here have referred the family to a specialist at the Children’s Hospital in Philadelphia, where they hope to learn whatever they can to give him better days and more time.
Justice is full of laughs and love but with the joy is uncertainty.
“What to expect each day,” said father, Shawn Justice. “We don’t know if we’re taking him to his last park trip or last ice cream trip or anything like that.”
Cameron Justice’s mom Alissa McClintock says she became worried when he wasn’t meeting his early milestones.
After months of doctor visits and tests, they finally have a name for what he has.
“It’s pronounced Hypomyelinating leukodystrophy, and it’s type 14,” said McClintock. “It’s a neurodevelopment disorder that affects the myelin in his brain. The myelin is what sends signals to the rest of his body and helps him communicate.”
The condition is so rare that only eight people in the entire world are believed to have it, meaning there are few answers and perhaps even less time to find them.
“I was never expecting to get a prognosis of two years for my son, so that was devastating to hear,” McClintock said.
In that devastation was the determination to get Cameron Justice to a specialist in Philadelphia.
“Hoping that they are able to try something or a clinical trial to help prolong his life,” McClintock said.
They expect to pay for some if not all of it out of pocket.
“Most times out of state visits are not covered,” McClintock said.
On July 17, they are hosting a big family-friendly party at Lankford Park in Melvindale that they’re calling the Cam Bam. There will be an exotic zoo, dunk tank, bounce house, raffles, food and fundraising.
They will also be selling t-shirts for $20 in support of Cameron Justice.
But it’s not as much about the money as it is the memories.
“Our biggest concern is just about the memories with Cam,” Shawn Justice said.
Anyone is invited to attend. The party begins at 3 p.m. and goes on until dark. All of the money raised will help the family make the trip to Philadelphia this August.
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They hope that what doctors learn from Cameron Justice may be able to help other families in the future.
If you would like to help the family with donations, click here.
