Project Sebastian: a safe space for the rare disease community to talk, listen and connect
By Geoff Case
Project Sebastian is Christopher Velona’s mission to find a cure for his son Sebastian’s condition—CLN8 (one of the many variants of Batten disease). Springing from that overarching vision has come Christopher’s new passion: bringing people together from across the whole rare disease community to share their emotional burden in person and online
Sebastian’s diagnostic journey
After several seizures within just a few months, Sebastian was initially misdiagnosed with epilepsy, but then he started to lose his eyesight, and there was also an obvious deterioration in his cognition, speech, balance and fine motor skills. “He was a baseball player, but he couldn’t swing the bat fast enough—he just couldn’t see the ball. He was running and then falling down for no reason.” Clearly something other than epilepsy was indicated, so—more than a year after his initial diagnosis—a neurologist referred Sebastian for genetic testing. Only then was Sebastian properly diagnosed with CLN8.
Project Sebastian: Christopher’s path and passion
Christopher was busy fundraising and planning events for Project Sebastian as the pandemic struck. With Sebastian’s new diagnosis, the project’s focus had already shifted from finding a cure for epilepsy to finding a cure for all variants of Batten disease; however, as time went on and the emotional burden of COVID-19 on society became startlingly clear, Christopher realised that Project Sebastian could also become a lifeline for people across the whole rare disease community.
Christopher’s brainwave was to create an open-door community space for anybody to visit, where they could share their struggles with the emotional burden caused by disease. Parents, doctors, caregivers, patients, siblings… Anybody with any connection to the 7000 plus rare diseases that are currently known. Anybody with conditions that are not rare but carry a similarly heavy burden, such as people from the special needs and Down’s syndrome communities.
The impetus had been Christopher’s feeling that there was something missing in existing social media networks. Where was the space, he wondered, for people to really connect emotionally with one another? Not once a year, once a quarter or once a month, but weekly. That, he felt, would be a massive boon for the community. After all, communities such as Alcoholic Anonymous have known the value of such meetings for decades.
Project Sebastian now provides that invaluable emotional space for the community, with its weekly meetings. They started modestly in Christopher’s local church in Santa Clarita, California, but are now generously hosted by Henry Mayo Newhall Hospital, just across the road, meaning a greater capacity for in-person visits and enhanced capabilities for online conferencing.
“What’s special about these meetings is that everyone’s on board. It doesn’t matter how old you are, what you’re suffering from, where you’re going. Everybody can benefit from these meetings if they allow themselves to be open and to talk… about their fears, their anger, their resentment.
“Rare disease is draining. Sometimes so draining that you just don’t want to participate in life. But these meetings are where you should feel safe and be able to say those truthful and heartfelt things about the impact of your diagnosis on your life and your relationships and about your experiences of healthcare. Nobody talks about these things, but we do talk about them.
“I think people are afraid to tell the truth because they’re afraid to be judged for their opinions. They’re afraid to be kicked out of pre-clinical trials. They’re afraid to be ousted from groups because people don’t know how to deal with hearing the truth.
“Let’s talk about the reality of living with rare disease—there’s a lot of good, I get that—but it’s important to talk about everything. the good, the bad, the ugly. When you hear people’s reality, you get perspective; you come away with a sense of gratitude and become aware that you’re not alone. There is somebody else—in that very room—that you can relate to.”