KEARNEY — Haley Neville, 11, doesn’t talk. She’s fed through a feeding tube. She used to require a wheelchair or walker to get around.
But ever since she began floating around the Turttle Pool at the CHI Health Wellness Center late this spring, she has begun to walk alone.
“If people reach out to help, she will push them away,” April Neville, her mother, said.
“Her focus is so much stronger after she’s been in the water,” Pam Mason, her nurse, said.
Haley, a sixth-grader at Sunrise Middle School, was born with Angelman syndrome, an inherited neurogenetic disorder. Its symptoms include seizures, developmental delays, delayed motor skills and an inability to speak.
“She loves anything with movement,” Neville, a single parent and a welder at Chief Agri/Industrial Division, said. “Rhythmic movement helps the brain communicate and opens up a way of learning. It helps her follow directions.”
Neville and Mason did not know that water would be so beneficial for Haley. “No one ever told us it would, but we thought we’d give it a try,” Neville said.
Mason, a registered nurse, researched Angelman syndrome before she began helping care for Haley in April. Mason is employed by Craig Home Care, a Kansas-based pediatric home health care service with offices in Grand Island.
“I found out online that people with Angelman syndrome love water,” Mason said.
Since the Neville home was within walking distance of the Turttle Pool, Mason decided to give the pool a try. “I chose the pool for its therapy and warmth,” she said.
At first, Haley was apprehensive. “She had been in a little pool before, but she was more afraid of this bigger one,” Mason said.
Mason helped her into the water. Haley could barely stand. She was off-balance, a little apprehensive. But soon, Haley was beaming with happiness.
The pool is a warm-water oval pool just 42 inches deep, flowing with a quiet current. Its temperature averages 88 degrees. In its center is a heated rectangular pool of about 102 degrees, perfect for therapy and water exercises.
The water was therapeutic for Mason, too, who had her own health issues in January. But Haley happily took to the water like a duck and never looked back.
Earlier this week, Mason held Haley as they circled the pool. “This is the best part of my job,” she grinned.
With Mason’s support, Haley floated on a purple foam “noodle.” Around and around the pool they went. Sometimes they worked with small rings. Haley, who walks with uncertainty at home, expertly climbed the small staircase in the center of the pool.
“Haley’s lungs are stronger. She started to take the stairs at the pool, do the rings, follow directions. She says hi to other swimmers, the seniors, people with special needs,” Mason said. Her affection for Haley is palpable.
“Haley has developed upper arm strength. She can catch and throw a ball. She’s more balanced. She walks. People have seen how well she’s doing,” she added.
Haley also has begun walking on her own at home. “She will push people away. She wants to walk on her own,” her mother said.
At last, a diagnosis
Symptoms of Angelman’s syndrome slowly reveal themselves during a baby’s first year. As an infant, Haley had frequent bouts of pneumonia. Food often slipped into her lungs when she swallowed, a condition called “silent aspiration.” That finally was diagnosed through tests in Omaha.
“It took a long time for us to figure this out,” Neville said. “We tested various diagnoses in 2009 or ’10. I took a lot of time off work. Finally, when she was 3, everything really started showing,” Neville said.
This summer, Mason took Haley to the pool after breakfast and stayed until they came home for lunch.
Haley’s health insurance paid for the first six hour-long visits at the pool. Now, Haley’s mother, having seen its benefits, is paying for the therapy herself. “With winter coming up, it’s good to keep her moving. She loves the outdoors,” Neville said.
Now that school is in session, swimming is just one aspect of Haley’s busy life. Mason arrives at 5:30 a.m., gets Haley dressed and gives her breakfast through a feeding tube. At 7:40 a.m., with the help of a paraeducator, Haley rides the school bus to Sunrise Middle School, where she is in a special education sixth grade class. The bus brings her home at 3:45 p.m.
Haley continues occupational and physical therapy at Treetops, a children’s program at Kearney Physical Therapy. She is playing soccer this fall through TOPSoccer, a program for children with disabilities run by the Kearney Soccer Association.
Mason, whose lifelong nursing career has included time in the intensive care unit at Good Sam, is thrilled with Haley’s water-assisted progress. The movement in the water keeps Haley’s muscles from going rigid.
Mason’s eyes sparkle as she talks about what water has done for Haley. Since she began swimming, Haley is beginning to eat a few soft foods, like yogurt.
“All she could do before was scoot. Now she has started to eat. Sometimes, her mom and I say we can’t keep up with her,” she said.