AHWAHNEE — When Ahwahnee resident Rick Hamilton’s 6-year-old son, Kalel, was diagnosed with Duchenne Muscular Dystrophy (DMD) just over a year ago, the family’s world was turned upside down.
“DMD is a fatal genetic muscle-wasting disease,” Hamilton said. “Currently there is not a cure, but we have been pursuing therapies over the last year that we think will preserve our son’s muscles and buy him time until a cure is found.”
Typically, Hamilton explained, boys who have DMD lose their ability to walk, sometime as early as the age of 1. Hamilton said the average life expectancy for those diagnosed with DMD is “late teens to early twenties.”
Tragically, most boys with DMD eventually succumb to heart or lung failure.
“The therapies that we have been pursuing are not covered by insurance and come at a huge financial cost,” Hamilton said. “So our family has joined forces with a New Jersey-based nonprofit that is funding a study our son is currently a part of.”
The nonprofit — called JAR of Hope — is dedicated to bringing awareness to DMD and raising funds directed to ongoing research in the hope of eliminating Duchenne Muscular Dystrophy.
The JAR of Hope study involves hyperbaric oxygen therapy that Kalel receives thanks to the nonprofit, which provides for the use of a hyperbaric chamber at the family’s home in Ahwahnee.
Quarterly infusions administered in New York to slow the progression of the disease are also involved in the study.
Currently just Kalel and four other boys are enrolled in the study. The other boys are from South Africa, Ireland, Pennsylvania and New Jersey.
“The study is privately funded and we have agreed to help raise funds to help save the lives of these five boys,” said Hamilton, who recently ran the New York City Marathon in his efforts to raise awareness for DMD — and to raise funds for the study.
At the end of February, Hamilton will be running a 200-mile stage race in New Zealand to again help raise awareness and funding in the battle against DMD.
“I’m on a mission,” Hamilton said. “It’s a mission to help find a cure for this disease because I want my son and other boys like him to not have to be on strict regimens and constantly visit medical specialists, to not have to continually be stabbed for blood draws or treatments, to not overhear conversations about life expectancy.”
Hamilton said he dreams of a day when Kalel can be carefree like other boys. “I’m running so boys like Kalel can be boys,” he said.
Hamilton is asking for the community’s support in his fundraising efforts. “After the diagnosis, we created a campaign — and a website — to raise money for treatments.”
The family’s FlexForKal website has t-shirts for sale and a PayPal link for those wanting to donate.
Those interested in helping can call Rick Hamilton at (559) 307-2032 and also donate through JAR of Hope’s website.