€3.5 Million for a Drug. New Record Collection for Child's Treatment Closed in Just Five Weeks
In early April, a fundraiser was launched for the treatment of 10-month-old Aliaksandr Yarsh from Slonim. He has a rare genetic disease – aromatic L-amino acid decarboxylase deficiency (AADC).
Today, the child's parents announced the closure of the fundraiser. The necessary amount – €3.5 million – was fully collected in five weeks thanks to the help of caring people and the support of the Ministry of Defense of Belarus, writes Onliner.by.
Aromatic L-amino acid decarboxylase deficiency is an inherited neurometabolic pathology associated with a mutation of the DDC gene. The disease leads to impaired production of dopamine and serotonin, which causes severe muscle hypotonia, developmental delay, and other serious disorders in children from the first months of life.
The treatment involves the administration of the modern genetic drug "Eladocagene exuparvovec". Essentially, it is an artificial gene that is introduced directly into the brain and replaces the damaged gene, helping to restore the production of necessary neurotransmitters.
The collected funds will allow the boy to undergo treatment in Moscow. He will travel there soon to begin therapy.
— According to the MRI results with contrast, Sasha is ready for surgery. We don't need to wait 18 months, the surgeons are already ready to take him for the drug administration. According to the doctors, Sasha is doing very well in terms of development, even for his diagnosis, he has great chances for a full life, — the boy's mother wrote at the end of April.
It is also reported that any remaining funds in the charitable account will be directed to help other children in need of treatment.
€3.5 million is the new largest amount ever collected for a child's treatment in Belarus. Previously, the record was $2.9 million, which was raised over 9 months for Artsiom Pad'yalowski.
Comments