Make-A-Wish East TN grants Lenoi

Make-A-Wish East TN grants Lenoir City girl’s wish to swim in family pool

LENOIR CITY, Tenn. (WATE) — Reagan Lively was diagnosed with Rett Syndrome at a young age, leaving her unable to walk and do normal kid things. Make-A-Wish East Tennessee gifted her and her family a pool heater, a pool lift and several other accessories.

“It doesn’t seem like a lot to some people but it’s a lot to us. Reagan is so different when she gets in the pool,” John Lively said. “She has a lot of stimming and movement; once she gets in, she calms down and relaxes. You can see the peace come across her face and just smile. To extend that with the pool heater to have more time in there, so it really helped with that.”

Rett Syndrome is a rare disease causing a genetic mutation of an ‘X’ chromosome. Reagan’s mom Suzanne said the disease is five different illnesses wrapped up in one.

“One of the symptoms is Parkinsons. That’s where all the movements and stimming comes in, a lot of the rocking and stimming with her hands,” Suzanne Lively said. “That’s what we like to see in the pool because it instantly calms her down.”

Although not terminal, the Lively Family said this is a lifelong disease. They never thought Make-A-Wish was something they could consider.

“That’s one thing about Make-A-Wish, I thought it was for terminal-type things and I never really thought about it. Someone said, what about Make-A-Wish and I said I thought it was just for this,” John said. “It’s not terminal but, you know, it’s terminal for the family. There’s a lot of challenges with Rett Syndrome.”

The family is thankful to their team of doctors for making sure Reagan gets the right care and for setting them up with Make-A-Wish.

“Thankfully, we have a team of really good doctors that care for her and watch out for her and are very cautious,” Suzzane said.

“Her pediatrician is the one that put us up for Make-A-Wish, filled out the paperwork and got all that started for us. He’s been amazing the whole time,” John said.

The pool heater the family received works around the clock keeping the water at 90 degrees and the lift will help John and Suzanne get Reagan in and out of the water as she continues getting older. The Livelys are thankful for all that has been done for them.

“We just want to thank them so much for what they’ve done because it is life-changing for a family like us. We don’t get to do a lot of things with her and activities are very limited. It’s really been a blessing and we want them to know how much we appreciate it,” Suzanne said.