Medina family to host fundraiser for Cystinosis research

Cleveland Sun News | Tara Quinn


Jake Krahe has been suffering from Cystinosis since he was an infant.

The rare, inherited metabolic disease is characterized by the abnormal accumulation of the amino acid cystine in each of the body’s cells. The build up eventually destroys all major organs according to the foundation. Medication is available to control some of the symptoms but there isn’t a cure.

But the Medina kindergartner’s family is working to change all that.

Jake’s family is hosting a fundraiser at 6:30 p.m. Sept. 28 to benefit the Cystinosis Research Foundation. The event will be held at Weymouth Country Club, 3946 Weymouth Road. Tickets are $75 per person.

Jake’s mother, Amy Krahe, said they started noticing symptoms when he was about a year old. His twin brother, Austin, was gaining weight and growing but Jake wasn’t. He was sick all the time and couldn’t keep anything down.

When a specialist noticed that his potassium was dangerously low, Jake was admitted to Akron Children’s Hospital at 18 months old. He stayed there for three weeks as doctors determined his kidney’s weren’t working and he needed a feeding tube. He fit the symptoms of Cystinosis, but not the typical profile, in which most patients have blond hair and blue eyes.

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