New Children’s Hospital facility providing cutting-edge care, saving lives

As Newborn Screening Awareness Month comes to an end, Children’s Hospital Colorado continues to share stories of triumph with CBS News Colorado.
Just last month, Children’s started a new multidisciplinary clinic for X-linked adrenoleukodystrophy, or X-ALD, which is a metabolic disorder that affects the nervous system and adrenal cortex. 
“I would say it’s one of a kind,” said Dr. Aaina Kochhar. “It’s all in one place, and we all rely on each other’s expertise, cutting-edge first-line care for our patients.”
Patients like 6-year-old Henry and his family are already reaping the benefits of its newly opened doors.
He’s living with X-ALD. Henry was diagnosed when he was just a baby because of newborn screenings offered by Children’s Hospital.
“It presents itself in boys in the X chromosome,” his dad Billy recalled initially getting the diagnosis. “It’s a degenerative disease on the brain matter. It presents itself in a variety of ways, one is just adrenal insufficiency, inability to create cortisone.”
Mom Shaundra added, “This disease, if it’s not addressed quickly, it is fatal. Time was of the essence.”
But immediately, the Duttons knew they were taken care of. “Their team made it very clear that they were in this for the long haul,” said Shaundra.
She says next steps weren’t easy, but they were manageable: “He had to get MRIs every six months and what we were looking for in the MRIs was to see the brain. Eventually, we saw a small lesion. The only (solution) is through bone marrow transplant or gene therapy.”
Thankfully, Henry did have a bone marrow transplant. On September 18th, he marked his bone marrow transplant anniversary. It’s an invaluable gift that all started at Children’s.
“We would like all states to do screenings because it is kind of a game changer,” said Shaundra.
Learn more about those special screenings here.