HENRICO, VA (WWBT) - A Henrico family hopes to raise awareness after their 10-month-old daughter died Christmas Eve from a rare neurological disease.
Ari’Elle Hatcher was diagnosed in July with Krabbe’s disease (also known as globoid cell leukodystrophy). It’s a disease that affects about 1 in 100,000 people in the United States, according to the Mayo Clinic.
Typically, babies who are diagnosed with this disease don’t live past the age of two; for the Hatcher family, their baby girl wasn’t even able to celebrate her first Christmas.
"It's a disease that half the world never heard about that took my baby,” said Quashawn Hatcher, Ari’s father. “She got it from us."
Quashawn Hatcher said he can’t help but feel responsible for his daughter’s diagnosis.
Krabbe's disease is a genetic disorder that destroys the protective coating of nerve cells in the brain and nervous system. Early symptoms of the disease can appear during the first few months of life.
According to the Mayo Clinic, early symptoms in infants include unexplained crying, extreme irritability, muscle spasms, frequent vomiting, decline in alertness, etc.
For Ari it happened around the four-month-mark.
"It started off with her not being able to eat on her own,” said Tanay Hatcher, Ari’s mother. “So when she turned four months old that’s when she was admitted into the hospital for a week."
As the disease progresses the signs and symptoms can get more severe.
“It looked like she was having seizures,” Tanay said. “She would shake; it would terrify us, it would terrify her sisters.”
For the longest time the family couldn't figure out what was wrong with their baby girl. Finally, after an MRI doctors diagnosed Ari with the rare disease.
"It took a lot out of her,” Tanay said. “It was a long time that we didn't see her smile. I think that's what hurt... She would babble, but that's all we had."
"When she did smile, it was the prettiest smile ever," Quashawn said.
But what frustrates the family most is this disease isn’t on the list for newborn screenings, despite dozens of other tests.
"If it was on the screening then we would have known she had it and she could have had a bone marrow transplant," Tanay said.
The transplant would have stopped the disease from causing more damage, but it's not a cure.
"We didn't even know that we carried anything,” Tanay said. “What are the odds of me finding my husband and bam, we have a child and find out we both carry something we didn't know anything about."
For the last six months the Hatchers have researched as much as they can about the disease; trying to make Ari as comfortable as possible.
"I think she really started fighting when she went to physical therapy," Tanay said.
A week before Christmas Ari took a turn for the worse, developing a pneumonia and then passing away Christmas Eve; her presents still wrapped under the tree.
While the family was prepared for this, Ari's loss is still incredibly difficult, but they know she's not suffering.
"I actually had a conversation with her,” Tanay said. “I told her Mommy's okay... I'm okay with God taking you. I let her know that she should be okay with going if she feels like she's ready."
As for Ari’s three sisters, Tanay said they have an angel watching over them.
“She’s with God, she’s an angel,” she added. “She’s not here in person, you can’t see her but she’s watching over you. You want to make her proud.”
Quashawn added he’s thankful for Ari bringing the family closer together.
"I really enjoyed her time here,” Quashawn said. “It was the best time ever."
Several foundations have been created to find a cure for Krabbe’s disease.