as we are swallowed by grief, our only comfort is looking to cade

We’re Emma and Dylan and this is our story.

As many of our close family and friends know, we have struggled to understand our son, Cade’s, developmental delays for the past 2.5 years. Since birth he has been the happiest kid who brings joy to everyone he meets, but he has always fallen behind his peers in meeting milestones. On August 10th 2023, we received the devastating news from a DNA sequencing study that Cade has an ultra-rare genetic disease called Hereditary Spastic Paraplegia (SPG50).

We are devastated. Though not much is known, we have learned that the disease is degenerative. Without treatment it will progress to Cade losing his abilities to move, speak, and think. We hope to defy the odds and do everything in our power to ensure a different future for our son.

In the depths of our despair we were told of an incredible father named Terry Pirovolakis who, only a few years ago, developed a gene therapy for his son with the same condition. So far, 4 children have been treated with promising results and we are hopeful to get Cade into the next round of clinical trials. From what we have learned, this is Cade’s best/only option for treatment. Because this disease is so rare, there is little known and little funding available for research and treatment.

The next round of clinical trials is upcoming and although nothing can guarantee Cade’s participation, he shows every indication of being a perfect candidate for treatment. Everything was moving forward smoothly until a funding crisis arose. Now we fear that Cade’s only hope may be snatched away from him at the last minute.

We are in a race against time to put together enough money to keep the clinical trials moving forward. If funding runs out, Cade or children like him will be denied a critical lifeline they need to survive this horrible disease.

As we are swallowed with grief, our only comfort is looking to Cade who is still the happiest child we know.