Road Warrior: ‘Tenacious Teagan’ Begins Her Travels

 In Pikes Peak Hospice
Kelsey Donnelly poses with her daughter Teagan Romano

Teagan Romano and her mom, Kelsey Donnelly.

Like many children, Teagan Romano capped off her summer with a family camping trip filled with sunshine, water and outdoor fun. Unlike most other children her age, though, Teagan’s trip was carefully planned to keep her comfortable, safe and healthy since getting COVID-19 or even just a mild cold could be disastrous.

Teagan, a pediatric patient of Pikes Peak Hospice & Palliative Care (PPHPC), has metachromatic leukodystrophy (MLD), a degenerative illness that affects her nerves and brain. Going anywhere during the pandemic has been scary, her mom, Kelsey Donnelly, said, but everything is about managing risks and finding balance in her quality of life.

“You want to be able to make sure they’re safe, but also that they get to go out and enjoy the world.”

This particular trip to Provo, Utah, was important for Teagan’s quality of life as well as for her parents. Teagan went on her first camping trip when she was just one month old, so Teagan’s family has worked hard to make sure she can continue to enjoy the outdoors. Kelsey is Teagan’s primary daily caregiver, but she consulted and double-checked with Teagan’s care team from PPHPC, which includes a social worker who visits once a week, to make sure they could safely travel.

The family also had a special safety net while on the trip. They joined up with other MLD families they had been talking and sharing support with since before Teagan was in hospice care.

“It was phenomenal,” Kelsey said. “We’ve known these people for three years, but it’s always been through phone, text, virtual meetings. To be able to meet them in person is emotional.”

Kelsey and her husband, Shaun Romano, found comfort in the network that had become like family. Others in the group understood their situation in a way even their blood family members didn’t. If an alarm beeped, everyone in the group would recognize a medical alert and say “Who’s that?” rather than “What’s that?”

“We all were backup for one another,” Shaun said. “Leaving was parting with lifelong friends.”

While that trip has ended, they’re looking forward to the next. Shaun has been continuing his work on converting a bus into a special camper that will serve as a home away from home that can help them keep camping and traveling while also giving Teagan the care she needs. Shaun’s current project is plumbing and insulating the bus to make it comfortable while on the road.

Although the bus wasn’t ready for the first trip, Shaun said he’s hard at work getting it done. He’s even had offers from some of her care team to help.

“Teagan made an impact on her care team. These are people who have been with us our entire journey.”

Kelsey said Teagan has been doing well over the summer. “She’s a warrior, she’s a fighter. She’s overcome some things that we didn’t know she would. She proves us wrong every time.”

You can follow along with Teagan’s future travels and her journey on her family’s Facebook page, @TenaciousTeagan.

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The entire hospice team exceeded our expectations always going above and beyond. They are the most amazing group of people. I can't even put into words how much we appreciate them. They were always very caring, patient and sincere. We could not have managed the process without them. We will never forget you and are forever grateful. Thank you. ~ Patient’s daughter

Everyone who came to attend to my wife were all fantastic caregivers and I cannot praise your hospice staff enough. I was so thankful you were there. ~ Patient’s husband

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