Local family to embark on bus adventure, spread awareness about rare illness

Published: Apr. 3, 2021 at 7:40 PM MDT
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EL PASO COUNTY, Colo. (KKTV) - The coronavirus pandemic has been hard on everyone, but for one family facing extreme health issues, its been debilitating.

Now that the world is slowly opening back up and more people are getting vaccinated, they are making up for lost time.

Kiley and Allie Ramono clearly love their sister,Teagan.

“She’s amazing,” Kiley Romano said.

Teagan was born a healthy baby, her mom says she was even advanced for her age. But when she was just a few years old, her parents noticed something was wrong.

“On October 13th of 2018 our entire world crashed down around us and they gave us the diagnosis of Metachromatic Leukodystrophy,” Teagan’s mother, Kelsey Donnelly said.

MLD is a rare hereditary disease that causes all of the brains nerves to become exposed. Teagan is now on oxygen, is fed through a feeding tube and cannot walk or talk. There is no cure.

“It’s been a really difficult journey but she is amazing,” Donnelly said. “She in so many ways has beaten the odds.”

Because Teagen is immuncompromised, her and her family haven’t been able to spend as much time out of their home as they would like to, the family decided to buy a bus also known as “Teagan’s Trolley” to tour the US an make up for time lost during the pandemic.

“The idea is she will have a bedroom, a full bathroom, she will have a living area and an outdoor set up--just more space. A home on wheels,” Shaun Romano, Teagan’s father explained.

The family plans to embark on their maiden voyage to the Grand Canyon this summer once the bus is complete.

“It’ll give her some normalcy again,” Shaun Romano said. “See these places and get videos and photos and watch her light up as she sees these things. She loves the outdoors.”

Spreading the light with other families isolated by the pandemic because of health issues.

A drive, for early detection.

“I would love for one day everyone to say Metachromatic Leukodystrophy and know what it is, exactly what to watch out for and exactly what to do,” Donnelly said. “Our biggest push is wanting to have it added to newborn screening. With it added to newborn screening...things could be so different for her.”

Teagan’s father agreed.

“At one point she didn’t have MLD. You know? She was, for lack of a better term--a normal child. The awareness is so big because you may think oh there’s no way--but we didn’t have it either.”

For more information on MLD, click here.

********Edited to add- here is the link for the livestream of Teagan's story, tonight at 10pm on KKTV 11 News (MST) ...

Posted by Teagans Trolleys on Saturday, April 3, 2021

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