Five years ago, 12-year-old Alex Chiabai was one of the first boy in Canada to begin taking drisapersen, a promising drug that provided a glimmer of hope for Alex and his family. After stopping and starting the drug several times over the past few years, Alex once again has the distinction of being the first boy in Canada to start taking drisapersen. This time, the drug is now managed by CD Access, a separate non-profit which was given ownership of the drug from BioMarin.
Much like many of the other boys who taking drisapersen, Alex and his family noticed that the drug was effective in keeping at bay the typical effects of Duchenne. For Alex, drisapersen kept his muscles from getting weaker, allowing him to continue walking and to have a sense of independence. When he was taken off the drug for 15 months, he noticed his body weakening, making it difficult to do the things he could do before.
Alex was able to get back on the drug for a year, again halting the disease’s takeover. Unfortunately, the dosing of drisapersen was stopped, and Alex has now been off the drug for a year.
His mother, Debra, has seen her son getting weaker. On drisapersen, Alex was able to maintain his strength and health. Now, he has lost the ability to walk. Five years after his first dose of drisapersen, 17-year-old Alex again has hope for the future.
“We are grateful for CureDuchenne and CD Access for going to bat for the boys in Canada, otherwise we would not have any other options,” said Debra Chiabai, mother to Alex. “Having access to drisapersen provides a source of hope and allows us to be proactive in the fight against Duchenne.”
With this redosing through CD Access, Alex and his family are optimistic that drisapersen will slow the progression and he will retain his muscle strength longer, with the hopes that Alex will also experience cardiac and pulmonary benefits.