Donations to help a Canadian boy with an ultra-rare degenerative disease have passed the $1 million mark.
Two-year-old Michael Pirovolakis could be paralyzed by age 10 due to hereditary spastic paraplegia-50 , a genetic defect in which the body fails to produce a certain protein essential for development.
Michael’s dad Terry Pirovolakis said there was disbelief when donations passed the $1 million mark on the way to an ambitious $3 million target to find a treatment for Michael and other children.Michaelwas due on Christmas Day 2017, but arrived on December 17 as an “early Christmas gift” his dad wrote on theHe’s a happy kid, according to his father, but isn’t speaking yet and suffers other developmental delays due to SPG50.
Through consultations with medical experts at Toronto’s Hospital for Sick Children and across the world, Michael’s parents learned that gene therapy has shown some success with neurodegenerative diseases like SPG50. “He’s a trooper and he tries, he doesn’t know there’s something wrong,” Michael’s mom Georgia Kumaritakis told CTV’s Your Morning in July.The gene therapy would use a virus to transport a corrective version of the gene that Michael is lacking.
Medical scientists estimate that they need a minimum of $3 million to fund a research initiative to develop gene therapy to cure SPG50 and three other similar conditions. “It pains me to know that instead of watching my son grow, learn and blossom into an independent young man, I will have to watch him regress, become wheelchair bound and slowly lose all functionality of his body and mind.”
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