Young Marion family devastated by genetic diagnosis of disease in both children

Seven year old Lilly Waeghe of Marion has enjoyed Nursery School, and field trips with her class as a happy, seemingly healthy little girl – until last year.

On the eve of Thanksgiving Day in 2015, Lilly began ill and suddenly developed a series of seizures. She was subsequently hospitalized and on artificial respiration. She was later diagnosed with Alper’s Syndrome.

Alper’s Syndrome is truly terrible disease, in that it seems to infect infants and young children. Simply put, the liver cannot process the ammonia in the bloodstream, therefore the contaminated blood reaches the brain and causes liver disease, seizures, immoblity, dementia and blindness. It affects one in 100,000 people and there is no cure.

Lilly had a slight liver issue when she was a 1 year and half, but nothing the doctors had a major concern with.

Lilly has, since her diagnosis, developed blindness, is immobile and in a wheelchair, and she is one a feeding tube. Her air supply is restricted and she has breathing issues.

Her mom Krystin DiPonzio and Dad Lucas Waeghe were devastated with their little girl’s struggles.

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