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SALT LAKE CITY — Baby Jeter DeJong's smile lights up the room at Primary Children's Medical Center. His mother makes silly noises at him, which only makes him smile even bigger.
When the 17-month-old was born, he seemed perfect. His parents named him after former Yankees player Derek Jeter. "It felt right for us. It fit, and we're like, "OK, Jeter,'" said Christy Brinson, who lives in Magna.
But Jeter didn't hit milestones. Tests showed something was wrong with his enzymes. The diagnosis: Tay-Sachs disease. It's a hereditary disease where a fatty substance in the brain destroys nerve cells. There are fewer than 16 cases each year in the U.S., according to the National Tay-Sachs & Allied Diseases Association.
"To see him smile, that's what I wake up for. I literally wake up, and I go and check on him and think, 'Thank God nothing has changed,'" Brinson said.
The genetic disease is progressive, and doctors say he'll go blind and deaf, and likely won't reach age 4.
"We spent months and months crying, and now I'm like, 'I'm not gonna let this disease define my son,'" she said.
She said doctors explained he will eventually lose his ability to smile. While that will be devastating, she said they'll never stop hoping and praying for a miracle.
They need a home run. Brinson said they're trying to get Jeter into a clinical trial at the University of Minnesota that has an expensive price tag; while most clinical trials are free, this one isn't due to lack of funding.
"He's definitely the love of my life. He's everything I ever wanted," she said.
For now, Brinson and Jeter's father live in the moment and document everything through photos and home videos.
Healing baby! I sure do love this angel boy!♡♡♡
Posted by Jeter's Journey on Wednesday, January 6, 2016
"I wouldn't change it for the world," she said. "If they said, 'Hey, we'll give you a different kid and he'll be healthy,' I wouldn't change him."
Jeter's family is raising money for his medical care. To help, visit his Facebook page: Jeter's Journey and a gofundme account* under Jeter's Journey.
*KSL.com does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisors and otherwise proceed at your own risk.
