Mom Jasmin Matharun says hearing the diagnosis was an "utter shock," adding, "our world completely stopped"
:max_bytes(150000):strip_icc():format(jpeg)/Baby-Eliyas-Story2-061026-8648272db7b14b969979d6986a3c258f.jpg "Baby Eliyas Story.")
Credit: GoFundMe
NEED TO KNOW
- A U.K. family may move to the U.S. for a trial to treat their toddler’s rare genetic condition
- One of only a dozen children worldwide, the 16-month-old has leukodystrophy, a genetic condition that affects brain development and body movement
- The family has raised over $34,000 on GoFundMe to help cover costs for the life-saving treatment in Chicago
A family based in the U.K. is considering moving to the United States to give their toddler son a fighting chance.
Jasmin Matharun, a loving mom, recently spoke with ITV News about her toddler son Eliyas, who is believed to have an extremely rare genetic condition that only 12 children in the world have. The 16-month-old was diagnosed with leukodystrophy, which impacts the development of his brain and body movement.
The loving parents first noticed something might be wrong with their son when he was failing to hit some of his milestones as a baby.
"As a parent, all you want is for your child to be healthy and happy. You don't think they're going to be diagnosed with an ultra-rare brain condition. Something so random, something not inherited," she told the outlet. "[The diagnosis] was an utter shock. Our world completely stopped. It was almost like the walls had closed in on us."
"His brain and his body are not catching up with each other. So day-to-day, he's very much still handled like a newborn," she explained. "It's essentially like having a newborn for 16 months, and we have a lot of physio we have to do day-to-day too."
Credit: GoFundMe
The family has found a pioneering trial being run in Chicago for children with their baby boy's condition. However, relocation comes at a huge cost for the family.
"It's the only chance we've got. We don't have any other option. It's genuinely life or death for Elyias," she said. "Currently, he's still progressing, but by the age of three, he will decline and we only know of one child that's made it to the age of 13 at the moment. So we haven't got a choice."
To help offset the costs, the family set up a GoFundMe, where they've since raised over $34,000.
Elizabeth Berry-Kravis, the professor running the trial at the Rush University Medical Center in Chicago, confirmed with the outlet that baby Eliyas has the condition, noting he has an early onset of the diagnosis.
"He's very motor delayed; he can look at you and interact and communicate some, but the disease really prevents him from making those normal developmental gains that we typically see in a young baby," she said.
Credit: GoFundMe
The trial would include gene therapy with medication delivered through a spinal tap. Doctors would use a drug that ideally would genetically correct the condition; however, the family would have to stay in the United States for months after the treatment is given.
"We see the patient for at least six months and oftentimes longer while they're waiting to get the drug… and we track them in really every developmental area so we know at what rate their speech is developing, at what rate their fine motor skills with their hands are developing, at what rate their gross motor skills like walking or sitting are developing," Berry-Kravis explained. "And then we have a trajectory — we have a rate of gain from before the patient gets treatment and then they go on the treatment."
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So far, only two patients have been treated for the condition, of which Berry-Kravis explained that it's too early to tell if it's been successful.
"It's always hard when a patient has developed abnormally for a while to change the brain and correct the abnormal development," she said. "And it takes a while to see whether that's going to happen or not."