Jessica Lumiere and husband David Nicoll set up the fund in honour of their late son, Rafe, who died from a rare genetic disorder
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.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.
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. 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.”
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