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.
Last year, according to the girls’ grandmother Anna Hasinaj, on Christmas Eve, Lilly’s younger sister Riley, age 3, had a seizure and was hospitalized. Fearing the worst, they hoped they were wrong about the prognosis. An EGG was performed and they were told Riley also had Alper’s disease.
The official medical descripition of Alpers’ disease is a progressive, neurodevelopmental, mitochondrial DNA depletion syndrome characterized by three co-occurring clinical symptoms: psychomotor regression (dementia); seizures; and liver disease. It is an autosomal recessive disease caused by mutation in the gene for the mitochondrial DNA polymerase
Just last Friday, Lilly was allowed to go home in her wheelchair. Another heartache has added to the family’s troubles.
Although medical bills are mostly being covered, the family has a major need for a handicapped accessible vehicle. The current vehicle is accessible for Lilly’s wheeel chair and she has a very hard time with her air supply trying to get into a small vehicle. The family also faces some non medical monetary issues, due to their trips back and forth to the hospital, and just in keeping up with life, bills and rent.
Both of their children are loved and cared for and many friends, family and strangers are praying for them.
A Go Fund Me Page has been set up to aid the family in their financial struggles.
You can give through the site at https://www.gofundme.com/in-honor-of-lilly-and-riley-waeghe, or for other ways you might help and assist the family, you can reach Anna at anhsm7@yahoo.com, or Melanie DiPonzio at Melaniediponzio@ymail.com
Wayne County is full of big-hearted caring people, and helping others less fortunate is its own reward.
*******UPDATE: SADLY, LILLY WAEGE PASSED AWAY AT 5:30 PM ON TUESDAY, FEBRUARY 13TH AT THE HOSPITAL. THE FAMILY IS GRATEFUL FOR ALL OF THE SUPPORT FOR THE FAMILY.*******
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