In 2019 at age 15 months Michael was diagnosed with an
ultra-rare condition called SPG50 disease caused by a single gene AP4M1.
Doctors explained that there was no cure, nor any treatment options for this rare neurological degenerative disorder which would slowly take away Michael's cognitive and physical abilities similar to Cerebral Palsy but progressive.
His Parents Terry & Georgia are unwilling to accept this prognosis and are hoping to fund gene therapy to cure or at least stop the progression of this terrible disease not just for Michael but all children affected.
This would not be possible if not for the amazing and courageous work being done by the families affected by SPG47 (Another disease within the AP-4 gene complex).