Like most 6-year olds, when Lilly Moore gets to go swimming, her excitement is apparent, her hands clapping together with glee.
The pool relaxes and strengthens her muscles in the one way that brings her true bliss.
That joy has been life-changing, says Lilly’s mother, Becki Moore. The happiness it has brought her can only be paralleled by the strength she has gained.
“The pool is her happy place,” Moore says, smiling. “When we even tell her we are going to the pool, she squeals and she just has such joy.”
Lilly has Rett syndrome, a rare neurological disorder caused by a gene mutation that almost exclusively affects girls at a young age. Infants can be healthy and seemingly developing at a normal rate but will rapidly lose ability of speech, coordination and use of their hands.
With no cure, the symptoms of Rett syndrome can be managed with speech and physical therapy. Hydrotherapy has proved to be the best medicine for Lilly since the condition took its toll on her around her first birthday.
“When she is in the pool, she almost loses those symptoms,” Moore says. “It has made her muscles so much stronger that we even got her into a standing position. That wasn’t possible six months ago.”
The progress in Lilly’s condition was enough for the Make-A-Wish Foundation of Oregon to see the benefits in her quality of life.
After Moore got in touch with the foundation in March 2016, Make-A-Wish decided to donate a personal hydrotherapy tub to be installed at the Moore house in Redmond.
“We always ask why is this their wish,” said Make-A-Wish liaison Ashley Schmidt. “It was very clear how beneficial this was for Lilly. She loves swimming and she really wanted to be able to share it with her family.”
Lilly and her mother have been traveling from Redmond to Healing Bridge Physical Therapy in Bend since just after Lilly’s diagnosis at age 1. Moore said Lilly was making progress just last year and the prospect of a therapy tub at home brought excitement to the family.
Then winter hit.
Without the ability to construct the necessary foundation for the tub and the deck and ramp for Lilly’s wheelchair, the plans for physical therapy at home were delayed.
And without the ability to safely travel to and from Bend, the plans for physical therapy in a pool were out of the question.
“She was making so much progress,” Moore said, “but it just wasn’t an option at that point.”
But the plans are back in motion with the help of local construction companies and the labor of Lilly’s father, David Moore. The dream of a therapy pool in their backyard could come to fruition before Lilly’s seventh birthday in October. David Moore is a contractor and coordinated with Make-A-Wish and personal contacts to complete the project with discounted and donated costs.
The materials needed thus far have been donated by friends of the family who have worked with David Moore in construction for many years. The gravel was donated by York Bros. Excavation, the concrete was supplied by Hooker Creek Construction and the concrete pumping service was provided by Perry’s Concrete Pumping of Bend.
The chance to give back was not a question, said Perry Williams. Williams has worked with other nonprofit charity groups such as Habitat for Humanity in Bend.
“I’ve known and worked with David for 17 years,” Williams said. “He’s just such a great guy and his wife is wonderful. This was an easy decision to get involved.”
On Friday, Williams worked with Moore and his brother to pour the concrete pad necessary for the delivery of the hydrotherapy pool. The pool is currently being manufactured by Marquis, a spa dealer that has partnered with Make-A-Wish many times.
The help from friends and family saved the family nearly $1,500 on the concrete pad, and David Moore will save on labor as he will do the construction himself, he says.
The rest of the funding for the project is another story.
With years of construction experience under his tool belt, David Moore said the biggest hurdle now is the cost of materials needed to build the deck and the ramp necessary to transport Lilly to and from the pool, as the Moores’ deck will need to be slightly larger to accommodate Lilly’s wheelchair.
The remaining overhang and larger-scale deck plans are considered “improvements to the house,” and the process to obtain building permits has humbled the family, Becki Moore added. The decision to build the deck and ramp instead of choosing the lift that would have been supplied by Make-A-Wish was the better choice for the family’s situation.
“I enjoy building stuff so I will be doing it myself,” Moore says. “The materials are just very expensive because the deck and stuff will have to be substantially bigger for her wheelchair to maneuver.”
The next step in the process involves an electrician to hook up the therapy pool, the cost of which is covered by Make-A-Wish. After the deck and ramp are built, Lilly’s physical therapy can continue at home, improving her quality of life.
“She just loves being outside,” her father says. “If we can create that hard-scape to allow her to be outside and go in her pool, I mean, that’s therapy in itself.”
— Reporter: 541-617-7829, firstname.lastname@example.org