COLORADO SPRINGS — Teagan Romano seemed healthy from day one with ten fingers and ten toes and hitting all the expected milestones.
But it turned out Teagan had an underlying medical condition – a rare disease that destroys nerves throughout the body.
“October 13, 2018, is a day we will never forget,” said Kelsey Donnelly Teagan’s Mother. “We actually got a call from her neurologist who said you know we got the results, and we want to see you in our office tomorrow. We think it would be best if you and Shaun came alone. That was scary.”
It all happened so fast.
Kelsey said, “We sat in his office, and we all cried together as he told us she had Metachromatic Leukodystrophy (MLD).”
Metachromatic leukodystrophy is an inherited disorder that affects the protective covering around nerve cells (myelin sheath), as well as the nerve fibers that the sheath insulates and protects. A rare, serious and progressive diseaseMayo Clinic – Shawn Bishop
At about two-years-old Teagan began losing her ability to walk, to talk, even to eat.
It all goes back to a genetic defect. People, like Teagan, who have MLD, are missing the enzyme arylsulfatase.
“Because of that deficiency – her body starts to attack her myelin sheath and her brain and so over time as it eats away at that myelin sheath it starts to expose all of those nerves, and so she starts to lose abilities, said Kelsey.”
On average late infantile MLD children live about 5-7 years.
Teagan’s parents say the most important thing you can do is catch this condition early.
Kelsey stated, “Had we known when she was born – she could have gone through a clinical trial – she could be living a more normal life right now.”
Today Teagan has a team of people ready to help her take life day by day.
“We have an amazing group of therapists and doctors and just a backing that is incredible,” said Teagan’s father, Shaun Romano.
But there is still so much to learn about this condition. Teagan’s family is trying to raise funds to help that happen with Coffee and Cruise.
The family has started a Facebook Page for Teagan, and many others like her to share about the fundraiser with Wheels Coffee, the coffee food truck, and some BBQ plus southern Colorado project cars will be there.
When: Saturday, March 14, from 12 PM – 6 PM
Where: Reptile Foods & More 8345 Blue Gill Dr. Red Shed, Falcon, Colorado 80831
What: Come by for $5 plates and southern Colorado project cars
Why: All the proceeds go to Teagan’s family
Head to mldnewbornscreening.org for more information on MLD.