A family desperate to raise $3-million to save their 18-month-old son is running out of time. Michael Pirovolakis has a rare degenerative condition that will start to take away function in his legs, arms and brain when he turns three. The only hope they have left is in the form of gene therapy.
Michael’s parents, Terry and Georgia Pirovolakis, began to notice their son was missing some major milestones and, after numerous doctor appointments, MRI’s and blood work, Michael was diagnosed with SPG50. This condition is a progressive brain disorder that begins in early childhood and it’s caused by a missing protein. This mens that as degeneration rapidly progresses, Michael will lose the ability to use his feet and hands, and how brain will slowly depress until there is nothing left. If a cure isn’t found, these spasticity and neurological delays will begin to affect him when he turns three.
Because this disease is so rare—only 57 people in the world have been diagnosed with SPG50—there’s very little incentive for drug companies or government funding agencies to finance initial research into a treatment.
A doctor in the U.S. has agreed to try to create a treatment that would replace Michael’s missing gene. This gene therapy may halt (or reverse) the degeneration that has already set in, but it comes at a hefty price.m
Michael’s family have turned to crowdfunding to try and raise $3-million in one year to pay for the clinical trial. At time of posting, they have $356,000. (You can donate to their GoFundMe page here.)
In the video clip above, Terry and Georgia tell us more about what will happen to Michael should they not raise the money and why they have to go to the U.S. for the treatment.