Warren family raises awareness of Nonketotic hyperglycinemia

WARREN – Lucy Mae Gordon of Warren was born on April 26, 2013, but her parents, Kristen and Justin, quickly learned something wasn’t right.

“All seemed well at the hospital and we were sent home with our “sleepy” baby,” said Lucy’s mom, Kristen Gordon.

“Lucy never cried, never woke up, and was not too interested in eating, she even slept through her entire first night home. As a new mom, I thought, “Whose baby sleeps through the night the first night?” Something was wrong. The next morning we brought Lucy into the pediatrician’s office.”

Doctors initially thought Lucy may have had epilepsy, but the diagnosis prove far more rare. 

“Her glycine level was 1254, the normal level is between 100 and 400, the neurologist said he would like us to take her to the University of Michigan for another round of testing,” said Gordon.

That’s where doctors diagnosed Lucy with a metabolic disease, NKH otherwise known as Nonketotic hyperglycinemia, a terminal and incurable disease.

“We were told she wasn’t supposed to live longer than about a week,” said Gordon. “We were told she was never going to smile, walk, talk, eat from a bottle, or even wake up and at 3 years old everyday with Lucy is a miracle.”

Lucy is only one of four children in Michigan who has NKH. Help raise awareness at their annual fundraiser.

“We hope to raise $30,000 for research and to donate to the families with NKH children,” said Gordon.

Here are the details on the fundraiser: 

Lucy’s BEElievers Bowling Fundraiser

Where: Imperial Lanes 44650 Garfield, Clinton Twp.
When: June 4th, 5pm

Pre-Registration through May 21st
$20 to bowl, includes two games, shoes and pizza
$10 non bowler, includes pizza
Children ages 5 & under by donation only

After May 21st tickets can be purchased at the door
$25 to bowl, $10 non bowler

For more info visit Lucy’s BEELievers Facebook Page: https://www.facebook.com/BabyLucyUpdates/timeline