ATLANTA — Many parents celebrate each of their child's milestones with a picture or a post on Instagram or Facebook, but one Atlanta family counts each day as a blessing.
Molly and Logan Cook's son, Liam, just turned 6-months old Friday, but he's spent the majority of his life hooked up to machines at the hospital isolated from the rest of the world because he's immunocompromised.
Molly said it's been a long six months.
"Being in the children’s hospital, we see a ton of sick kids and it’s hard," she explained.
Liam was born on March 1, 2023, weighing seven pounds and five ounces -- being placed on his mom's chest just before 7 a.m.
"He came out screaming and latched the first night, he was perfectly healthy," Molly said.
Within hours, nurses whisked Liam away.
"We noticed his body temp started going down," Molly explained. "So then they were like, 'Just to be extra careful, we're going to take him to the NICU to monitor him.' My husband went down an hour later and he had stopped breathing, had been seizing."
They would soon learn that little Liam had been born with a rare genetic disorder that threatened his life.
"He went from what we thought was perfectly healthy to he had a 50/50 chance of living well within two days of being born," Molly said.
Doctors diagnosed Liam with an Ornithine transcarbamylase (OTC) deficiency which is characterized by the complete or partial lack of an enzyme that breaks down nitrogen in the body.
"It's just every single day, (it is) hour-to-hour, constant vigilance. Always worried that he may be dying," Logan said.
The only cure for an OTC deficiency right now is a liver transplant. Both Molly and Logan are not eligible matches to donate their liver.
Liam has been in and out of Children's of Alabama for the last six months because of their special genetic team focused on infants. His parents have been by his side every day since. They say while they wait for their son's match, they're trying to enjoy every second they have with him.
You can support Liam's family here, and you can apply to see if you would be a candidate to donate your liver here. Applicants should fill out the recipient portion of the application with Liam Cook as the patient and the hospital as UPMC.
