GRAND RAPIDS, Mich. — After their daughter was diagnosed with a rare condition, two Grand Rapids parents are making it their mission to keep her healthy with a fundraiser.
Lily Cieslinski's parents said with the community's support, they're hoping their fundraiser, called Love for Lily, will help find a cure for their daughter's condition
“This has been a time of tremendous uncertainty for us and so doing a fundraiser and trying to do something positive and concrete for her has been what we can do right now," said Lily's father, Andrew Cieslinski.
Nine-month-old Lily was diagnosed 11 weeks ago with a rare metabolic condition called PDCD, which stands for pyruvate dehydrogenase complex deficiency.
“Basically it is a rare metabolic condition in which her body can't process carbs or sugars for energy. We just know she was excessively sleepy. She had had a brain bleed in utero so we were thinking maybe it was because of that. But after some genetic testing, it was revealed that she had that," said Lily's mother, Holly Cieslinski.
PDCD occurs in one and every 40,000 to 50,000 births each year and most children with the disease aren't expected to live past the age of four.
Holly and Andrew are hoping to raise awareness of this rare genetic and potentially life-threatening disorder by organizing a fundraiser in Grand Rapids.
The fundraiser will be held on June 30 from 11 a.m. to 4 p.m. at the Fulton Street Market.
“This felt like a way that we could, you know, try to find a cure for her. It started just by reaching out to the Fulton farmers market and just asking if that could be a space that's rentable for it. They were all on board, and it really just spiraled from there," said Holly.
Vendors from across Michigan will be selling a variety of items at the fundraiser with a portion of the proceeds going towards PDCD Research.
Holly and Andrew said they hope the money raised will help fund research to find a cure for PDCD.
“This disease is a good candidate for gene therapy and that's why it's so important, is it's not a commercially profitable disease to cure because it's rare and so it depends on us as parents, rallying and raising money," said Holly. "I think most importantly is people who can donating to the foundation and just helping. Every little bit is going to help, and I mean kids like Lily, they deserve it. They deserve a chance."
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