Make-A-Wish Foundation has helped many dreams materialize for children with life-threatening medical conditions — trips to Disneyland, a chance to meet their favorite sports hero, a family vacation in an exotic place.
But soon-to-be-6-year-old Jake Hamre, of East Bethel, chose something a bit more unusual, and it turned out to be the perfect choice for him: a hot tub.
Jake was diagnosed a year and a half ago with a mitochondrial disease, a very rare illness that can present itself in a wide range of severity levels and until very recently was extremely difficult to diagnose. Though there is now a simple blood test that uses genomic sequencing to check for the condition, that test was not available when Jake’s parents, Brock and Becky, first suspected that something was wrong during Jake’s first year.
“He was just missing so many milestones, like crawling and walking,” Brock said. They took Jake to numerous doctors who tested him for almost everything. Finally, in July 2012, he was diagnosed at the Mayo Clinic with a mitochondrial disease.
Jake’s case falls somewhere toward the bottom of the middle range of severity, Becky said. With this disease, the mitochondria in a person’s cells fail to produce sufficient energy for normal body functions. In mild cases, a person may simply feel tired all the time. In extremely severe cases, an infant with the illness may not survive more than a few months.
Jake’s symptoms include low muscle tone, delayed growth, difficulty holding his eyes open, and limited verbal skills. He can stand but has a hard time walking without a walker. But despite his challenges, Jake is good-natured and has a positive attitude, his parents said, and he waves his arms and squeals with enthusiasm at the mention of his new hot tub.
“He absolutely loves the water,” Brock said. On a recent trip to Big Sandy Lake, they could hardly get him out of the lake. He has always enjoyed pools and water parks; the water provides a great opportunity for him to play and splash while strengthening his muscles, he said.
It was in February 2013 that the Hamres were first in touch with the Make-A-Wish Foundation, at the suggestion of Becky’s brother, Chad Forga. Make-A-Wish is a charity that, with the help of donors and volunteers worldwide, has granted more than 280,000 wishes for ill children since its inception in 1980.
In July, the foundation contacted the Hamres with the news that Jake’s wish would be granted. UnitedHealthcare had sponsored Jake’s wish through its alliance with Make-A-Wish.
And so the preparations for the hot tub began. Because Jake is sensitive to the cold, the Hamres decided to convert their existing three-season porch into a hot tub room.
This required construction work – the room had to be insulated and reinforced to be able to hold the weight of a full hot tub – but they received some help along the way. An insulation contractor insulated the room for free, and a tile professional installed their tile at no charge.
Finally, a few days before Christmas 2013, the tub was installed, filled up and ready to use.
Jake loves the tub and spends several hours a week playing in the warm water, his parents said. Having a hot tub right at home enables him to benefit from water therapy more often, since it eliminates the time and money spent to go to a facility with a pool.
And it’s doing him a world of good, his parents said. During the first month, Jake didn’t have enough strength to hold his face up out of the water, even with his life jacket on. His parents had to support him or his head would lean toward the water. But a few weeks later, he had developed enough strength that he could hold himself up. He can even do modified water “pull-ups” on a metal bar in the tub.
Jake isn’t the only one who loves the hot tub. His brother Max, a hockey player and first-grade student at Cedar Creek Community School, has also been having fun playing with his little brother in the water.
There is no cure or treatment yet for Jake’s mitochondrial disease. Physical therapy is the only tool available to help him improve his muscle strength and coordination, so the hot tub is a great addition to his biweekly physical therapy sessions and daily therapy at home, Brock and Becky said.
They are hopeful, they said, that research will eventually result in an effective treatment. In the meantime, they are looking forward to participating in the United Mitochondrial Disease Foundation Energy for Life Walkathon on Aug. 16 in Bloomington. Becky’s sister, Jen Brown, is a co-chair for the walkathon.
For more information or to support the walkathon, visit www.energyforlifewalk.org. More information about mitochondrial diseases is at www.umdf.org.