Patient Warrior's Fight to Cure SPG52

Spastic paraplegia type 52 (aka SPG52) is an ultra rare neuro degenerative disease with only about 30 known cases in the entire world. The disease is caused by a genetic mutation of the AP4S1 gene and affects a person’s cognitive and physical abilities. As time goes on spasticity takes over their body leaving them unable to walk or move independently (if they were ever able to gain that skill to begin with). Our son Dante is one of these ultra rare cases and we’ve been fighting for a cure since his diagnosis just before his second birthday. Currently he can’t walk or stand without assistance, speaks very few words, and has very poor fine motor skills. He works hard every day to learn how walk, talk and to play with his peers. But as he reached his fifth birthday this year, we’ve seen the affects of the spasticity on his body and how much more he struggles to do things most take for granted like sit criss-cross on the floor for story time, stand up for 5 seconds without tumbling down or ride a bike. And being such a rare disease, SPG52 research doesn’t get the funding or recognition it needs to help cure Dante or other patients. We’ve have an amazing opportunity for a gene therapy treatment that could stop the progression of Dante’s disease- his best chance at a cure. But we need help to raise the money it would cost to get to clinical trials and eventually the treatment. We need your help to raise awareness and raise funds for the gene therapy research. Follow our journey on Facebook and Instagram (@PatientWarrior52) or at PatientWarrior52.com. Thank you so much for your help and support! Dante truly is a patient warrior in so many ways and we’ll never stop fighting for him or to #CureSPG52.