The doctors in Budapest used a system to measure Jayme’s motor development, and he has gone up 13 points since his treatment in early August. “That is really above average”, says Varda van Ruyven, aunt of the boy, at Beau. “What he does with his legs now, he was previously unable to do. He can turn his head from left to right and is much more mobile with his arms and legs.”
The muscle disease SMA from which Jayme suffers is very deadly, most children die before the second year of life. Due to a gene defect, the muscle functions slowly fail, until breathing is no longer possible.
Watch the conversation about baby Jayme here:
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Jayme was injected with the drug Z Accordingma via an IV on August 4, after which he and his parents stayed in Budapest until last week. The treatment was made possible by a crowdfunding campaign that raised the required amount of more than two million euros was picked up.
‘Cheerful little guy’
The drug had only been tested on a very small group of children and has only been on the market since 2018. Nothing is yet known about the long-term effects and side effects, but the short-term results are promising. The drug is approved by the EU, but due to the limited results in the Netherlands only children younger than six months old are treated with it.
According to his aunt, the “happy little boy” can “live as old as you and me, but with a different quality of life if you want to call it that.” About the support the family received from the crowdfunding campaign: “Thanks to all those people, we don’t have to say goodbye to him now.”
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