Jessica Lumiere, left, with her husband David Nicoll and children Willow, second from left, and Owen in Halifax on Sept. 18. Lumiere has started a 5K fundraising walk in Halifax for the IWK Health Centre in honour of her son Rafe who died at six months from a rare form of spinal muscular atrophy.Darren Calabrese/The Globe and Mail
The organizer: Jessica Lumiere
The pitch: Launching Rafe’s Run
The cause: The IWK Foundation in Halifax.
It’s been 12 years since Jessica Lumiere and her husband, David Nicoll, lost their baby to a rare genetic disorder, and only now does she have the strength to talk about it publicly.
“I’m at the place now where I feel like I’m okay to tell his story,” Ms. Lumiere said from the family’s home in Halifax where she works as a lawyer.
Rafe Harrison Nicoll was born on Oct. 4, 2012, and at first he seemed like a normal, happy baby. But after three months, Ms. Lumiere and Mr. Nicoll noticed that he wasn’t thriving.
Doctors conducted a multitude of tests and determined that Rafe had spinal muscular atrophy, or SMA, a genetic condition that affects nerves that control muscle movement. The couple were just adjusting to that news when Rafe started having trouble breathing. That led to further tests by a geneticist who concluded that he had a rare disorder known as SMA with respiratory distress.
People with SMARD “lose the ability to use their muscles but it starts from the inside out,” Ms. Lumiere explained. “And so the first thing that he lost was his ability to move his diaphragm and breathe properly. So he was almost six months old, and we lost him to the disease.”
Few people outside the family knew what happened until now, and Ms. Lumiere is hoping that Rafe’s story can help other families
She and her husband have set up an endowment fund in honour of their son at the IWK Foundation which supports the IWK Health Centre where Rafe was treated. They’ve organized Rafe’s Run, a five kilometre walk/run on Oct. 6 to raise money for the fund which is earmarked for the hospital’s pediatric intensive care unit. The family hopes to raise $15,000 and make it an annual event.
Ms. Lumiere and Mr. Nicoll will be doing the run with their children, 10-year-old Willow and Owen who is 15. The family celebrates Rafe’s birthday every year and Ms. Lumiere said the run will make his 12th even more special, especially for Willow and Owen. “I think it’ll be fun for them to have something else that kind of teaches them about giving back, and that’s about their brother,” she said.