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Pikwakanagan boy Kevin Verch to receive treatment for rare genetic disease

Author of the article: Tina Peplinskie Publishing date: Jan 11, 2021  •  January 12, 2021  •  2 minute read  •  Dana Pearce and Brody Verch of Pikwakanagan with their 14-month-old son Kevin Verch. Kevin has a rare neurological condition called SMA. On Saturday, Jan. 9, the family learned Jordan s Principle, an organization that supports First Nations children, will provide the funding for the drug Kevin requires. Photo by Errol McGihon /Postmedia Article content The prayers of a Pikwakanagan family have been answered. Dana Pearce and Brody Verch learned their 14-month-old son Kevin will receive a life-saving drug thanks to funding from Jordan’s Principle, an organization which supports First Nations children. Lil Kev, as he is known to the family, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 on Dec. 26, 2020. SMA is a rare genetic disease caused by a defective or missing SMN1 gene affecting one in 10,000 babies.  It causes loss of nerve cells call

Family pinning hopes on fundraisers for toddler s $2 8M treatment

Family pinning hopes on fundraisers for toddler s $2.8M treatment A Pikwàkanagàn First Nation family is scrambling to raise millions of dollars for to provide a cure for their 14-month-old s genetic disorder, spinal muscular atrophy, before he turns two. Social Sharing Born with genetic disorder SMA2, Kevin Verch must receive one-time dose of Zolgensma before he turns 2 Posted: Jan 07, 2021 4:00 AM ET | Last Updated: January 7 Dana Pearce, 20, Brody Verch, 22, and their son Kevin Verch. The family is relying on fundraisers to pay for the toddler s $2.8-million genetic treatment for spinal muscular atrophy, which he must receive before he turns two in November. (Submitted by Dana Pearce)

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