NOTN- When Emma’s son, Cade, was just five months old, she noticed he was falling behind on developmental milestones. Doctors told her he was “just a late bloomer.” But after years of searching for answers, specialists diagnosed Cade with SPG50, an ultra-rare genetic disease that slowly robs children of the ability to control their bodies.
The Juneau community has rallied behind Cade’s cause, A daylong radiothon hosted by KINY on Saturday raised $35,000 to support 4-year-old Cade Jobsis.
The event, ran from 10 a.m. to 5 p.m. and featured prizes such as a helicopter ride from NorthStar Helicopters, an Eaglecrest ski pass, and a yearlong membership to the Rainforest Playzone.
Funds will support Cade, who was diagnosed at just 2 years old with SPG50, a rare form of hereditary spastic paraplegia that causes progressive loss of mobility. Fewer than 100 cases are known worldwide.
His mother, Emma, said her family spent years searching for answers before receiving Cade’s diagnosis. Doctors initially told them there was no treatment.
“There’s only around 100 cases in the world, and because of that, there really isn’t any interest in treating this disease or developing treatments for a disease that’s so rare.” Said Cade’s mom, Emma Jobsis, “So when we left the hospital after hearing his diagnosis, the doctors basically told us, there’s nothing we can do. Take him home, love him, he’s going to fade way in front of your eyes, basically. And we were distraught, as any parent would be.”
Because of the disease’s rarity, pharmaceutical companies and government agencies have shown little interest in funding development. Instead, families like Cade’s are leading grassroots efforts to raise millions for research.
“We decided we just have to do it by any means necessary, we have to raise the money and get this drug through clinical trials, because I can’t live with the fact that the next mom is going to be sitting in the office hearing what
I heard when there’s a drug that exists, but you just can’t get access to it because it’s not approved.” Jobsis said.
Emma said the Juneau community’s response has been overwhelming.
“My town has pulled off something incredible that I never expected. This kind of showing up from my community.” Said Jobsis, “People that I’ve never met in my entire life are texting, emailing, calling, telling me they heard my story, they heard about Cade, and they want to help. And it’s just, it’s so surreal to feel like the community backs you in such a huge way.”
Listeners heard interviews with Cade’s family and others around the world affected by SPG50, as well as with the Canadian father who helped create the experimental gene therapy.
“I have found so much good in people through this process, through this fundraising and advocacy, I’ve felt so much compassion and generosity.” Jobsis said, “Leaning on each other, that’s what it means to be in a strong community. And I’m so grateful to be here and to all Juneau and beyond, supporting us in this way.”
Organizers say the true prize was seeing the community come together for Cade’s future. Donations can still be made at cureforcade.com.
