Michael Pirovolakis was born one week before Christmas of 2017 — an early gift for his mother and father, who brought him home as the fifth member of their family.
“He had 10 fingers, 10 toes and big blue eyes — what else could we ask for?” said his father Terry.
But on April 2, 2019, at 15 months old, Michael was diagnosed with a rare brain disease called SPG50, which is caused by a single gene AP4M1.
Doctors told his parents that there is no cure nor any treatment options for the rare neurological degenerative disorder, which will slowly take away Michael’s cognitive and physical abilities — including his ability to walk, use his hands and perform other basic motor skills.
Michael’s parents Terry and Georgia said that they are not willing to accept the prognosis. Now they are hoping to fund gene therapy to cure or at least stop the progression of Michael’s disease — not just for him, but for all children affected.
The message below was written by Michael’s aunt Christine, who along with the entire Pirovolakis family has set a fundraising goal of at least $3 million to fund an experimental trial in the United States.
The family also released a short video (see below) in which they tell their son’s story — and ask for public support.
How far would you go if you knew you could cure your child?
This is the unfortunate challenge my family is now faced with, and hopes to achieve — hopefully with your help to bring our plight to the forefront.
We are in a race against time to try to cure my 19-month-old nephew, Michael, from an ultra-rare brain disease, SPG50.
Michael was born with SPG50 — a neurodegenerative condition that will take away function in his legs, arms and brain — most likely before he can even go to school.
He is one of 57 people in the world with this condition and the only one in Canada.
The key to finding a cure is through gene therapy. Research into developing a cure for SPG50 has started and funds are needed right away for the research and clinical trials.
Michael’s parents, who live in Toronto, have started a charity campaign in Canada and the United States to raise the more than $3 million needed to fund a gene therapy experimental trial in the United States.
The charity — named Curespg50 — is garnering a lot of publicity, with Michael’s story already being broadcast nationwide and online on Globalnews, CTV, CP24, CBC Radio, the Globe and Mail and in an extensive report on CBC.
But without the help of professionals like you to help spread the word, we are unlikely to reach the target in time.
Curespg50 is registered in both Canada and the US and is able to provide tax receipts, and given Michael’s story is gaining widespread publicity, we would acknowledge your support on the website.
It takes a village to raise a child — and it will take the help of many around the world to cure a sick one.
See their video
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