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Family holding fundraiser for children with incurable disorder

Lucy diagnosed with NKH as an infant

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STERLING HEIGHTS, Mich. – A local family is holding a bowling fundraiser Friday night to benefit people with Nonketotic Hyperglycinemia (NKH), an illness their daughter, Lucy, was diagnosed with at a young age.

NKH is a rare genetic disorder that affects roughly one of every 60,000 children. Kids with NKH have a problem breaking down the amino acid glycine, which can trigger seizures, low muscle tone and severe problems with learning and development.

Current treatment for the disorder is limited, and there is no cure.

To participate in the fundraiser, check in at 7 p.m. at Sterling Lanes at 33200 Schoenherr Road in Sterling Heights. Bowling starts at 8 p.m.

Tickets can be purchased at the door. The cost is $25 for bowlers and $10 for non-bowlers.

All proceeds will benefit NKH research.

There will be a strike ball, mystery ball, 50/50 raffle, themed basket raffle, sports raffle, wheelbarrow of cheer raffle and bake sale at the event.

This event, in its second year, is called "Lucy's BEE-lievers."

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When Lucy was young, her parents noticed that she never cried, never woke up and was uninterested in eating. After she slept through her entire first night home, her mother called the doctor for a checkup.

After looking at Lucy, the doctor called an ambulance and took the family back to the hospital. Lucy had two seizures and underwent an array of tests at the hospital.

About a week after being born, Lucy finally opened her eyes and cried. After a week in the PICU, the parents were finally able to take her back home.

They finally got an answer at U of M hospital that their daughter had NKH. Doctors said Lucy wasn't supposed to live longer than a week, but now she is two years old.

Today, Lucy still suffers from seizures, but she has far fewer than doctors predicted. She goes to therapy twice each week and participates in the Walk with Me palliative care program through St. John's.

To support Lucy and other kids with NKH, you can join the family at their fundraiser Friday night. For more information, see the flyer posted above.