All we want is to give Jack a chance at a full life.
Jack’s Story
We always wanted to be parents. We both wanted babies as soon as we got married. We didn’t expect it to take 3 years, countless medical procedures, losses, and the gift of modern science to have one. But it did. Jack is our miracle.
Jack was born in August of 2017, perfectly healthy. When he was around 6 months old, we noticed he wasn’t meeting some milestones. Devin was worried but everyone, including doctors, told us he was just fine. He might be delayed but he would develop in his own time. We started Jack with physical therapy anyway and began working with a pediatric neurologist to determine the cause of his delays.
Everything changed on April 6, 2022. After years of therapy, evaluations, and testing we were told that Jack has an extremely rare genetic disorder called SPG50. The doctors told us that SPG50 is degenerative, both physically and mentally. The doctors explained that spasticity starts in children’s legs, slowly taking away their ability to walk. The spasticity then takes away their ability to use their hands, and ultimately, their mental capacity.
Our world stopped turning at that moment. The bottom fell out from beneath us. Hearing that for our sweet little boy was pain like we’ve never experienced before. Our hearts were broken.
On our darkest day, we were also given a ray of hope. Doctors told us that a father in Canada, Terry Pirovolakis, had spent 4 years working to develop a gene therapy to treat his son who also has SPG50. Just weeks prior, his little boy Michael had received the first dose.
It was incredibly hard to process, but in the midst of the devastation and fear and sadness, there was hope. We could save Jack.
And that’s why we started Jack’s Corner. We need your help to cure Jack and other children with SPG50.
About Jack
To know Jack is to know the twinkle in his eye, the sweetness of his heart, and the gift of his laugh, which is our favorite sound in the world.
He is loving, smart, and happy. He delights in reading, adores trucks, and has fallen in love with horseback riding. Jack has a very specific taste in music (more Drew Holcomb, please!) and can name a song from hearing the first few bars.
Jack would be outside 24/7 if he could be. The beach is his favorite place, where he needs only a shovel to dig and his legs to run to be happy.
About jack’s corner
Lincoln’s Corner is a subsidiary of Jack’s Corner Foundation and a member of the Jack’s Corner Foundation Network.
Jack’s Corner is a 501 (c)(3) nonprofit organization dedicated to improving quality of life and finding a cure for children with SPG50 through the funding of research and acceleration of gene therapy treatments.