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.
Thank you
We are deeply humbled and extremely grateful to share that Jack was chosen as the first patient in the US clinical trial for SPG50 gene therapy and received his dose of Melpida in February 2023 at UTSW Medical Center and Children’s Health. To be able to say those words just under a year after his diagnosis is truly a miracle.
We have a long road ahead. Jack is currently on an immunosuppressive drug protocol so that his body will not fight the new gene, and he has a lifetime of intensive physical, occupational, and speech therapy in front of him. It will be years before we start to understand what the treatment will actually do. But there is hope. Real, tangible hope.
We owe everything to Terry Pirovolakis and CureSPG50, without whom this treatment would not exist. It is impossible to convey how astonishing it is that Terry created this gene therapy from nothing in 3 years. He is a force of nature. His determination, endurance, and love for his son made miracles happen.
We are forever grateful to the gifted team at UTSW who have taken incredible care of our little boy every step of the way, in particular Dr. Susan Iannacone and Dr. Souad Messahel. We have had some scares throughout this process and we owe Jack’s life to their expertise and dedication.
We are incredibly thankful to Dr. Steven Gray and Dr. Xin Chen at UTSW who, even throughout the Covid pandemic, made sure that the experiments, tests and designs required to get to a clinical trial, were performed.
To all of you who have joined us in Jack’s Corner…thank you with all of our hearts for the incredible generosity, love, and support you have given us. You listened to our story and believed in giving children with SPG50 a chance to live the lives they deserve. We are here today because of you.
From small beginnings come great things. Jack is just one child who now has hope to live a full life. There are many more who deserve that hope, and we are committed to ensuring they get it.