‘Little miracle’: Family shares son’s medical journey to encourage others
TEXARKANA, Texas — A local mother shared her son’s story on his rare genetic condition as a way to inspire other families who are dealing with something similar to keep going.
Katherine Malca and Justin Coats, parents of Eli Coats, have had many hospital stays from Little Rock to Dallas to Houston — and some even farther — to get answers when Eli began facing health problems after a common case of the flu.
Malca had a rough pregnancy and was on bed rest for 15 weeks. Eli was prematurely born at 30 weeks and had a three-week stay in a neonatal intensive care unit in Little Rock.
“Up until 2 1/2 years old, he was your typical child. He was a little delayed on hitting his milestones, but no major concerns,” Malca said.
Then Eli became sick with the flu, and things quickly escalated. His brain and spine began to swell, and the same signs presented themselves again a year later. After many tests, doctors diagnosed Eli with Aicardi-goutieres Syndrome, a rare genetic condition that affects the brain, spinal cord and immune system.
According to the Children’s Hospital of Philadelphia, AGS is a type of leukodystrophy, a group of conditions that affects the white matter of the brain. In AGS, the body’s immune system destructively turns on itself, targeting the white matter called myelin. Myelin loss causes the effects of AGS.
Eli was accepted into a medication trial in Philadelphia that aimed to help stop AGS’ progression. There is no cure.
“We are so thankful for this medicine because Eli really hasn’t had any more of those episodes since then, and it’s been about six years now. No more swelling in the brain or spine now,” Malca said.
Ronald Mcdonald House Charities helped the family throughout their journey. Ronald Mcdonald Houses provide a home away from home for thousands of families each year, giving them a place to sleep along with all the necessities they need, as if they were at their own home.
Malca said she is thankful for RMHC because it allowed her to be around others who understood what she was going through — not necessarily the same diagnosis but being away from home due to a child being in the hospital for extended stays.
“I don’t know how to say this, but
Ronald Mcdonald gave me a place to be able to cry so I didn’t have to do it in front of (Eli). I had to be that strong person in front of him, and I didn’t want to scare him when I was scared myself,” Malca said.
RMHC provided her with a safe space to rest, with a lot of nice people there, she said.
“Often people come to a simple doctor appointment at Arkansas Children Hospital and find out some life-changing news. They’re suddenly hours from home with nothing and nowhere to stay,” said Candice Hickman, communications director for RMHC Arkansas.
Malca had to spend many days away from work because of her son’s hospital stays. Hotels became costly, and that’s where RMHC has been a tremendous blessing to her and her family.
“Families are often here for weeks, months, and many spend upward of 300 days with us. We provide everything you would need to be as normal as possible so all that attention and focus can go toward making healthcare decisions for their child” Hickman said.
Malca said Eli is a strong and resilient boy. He will turn 12 years old in April.
“He is our little miracle for sure,” she said.