AHWAHNEE – Calling on all community members to come out Saturday Nov. 14 from 11 am to 4 pm (rain or shine) to support Kalel.
7-year-old Kalel has Duchenne Muscular Dystrophy. Duchenne is a rare fatal muscle wasting disease that currently does not have a cure, but we have been pursuing therapies that we think will preserve our son’s muscles and buy him time until a cure is found.
Kalel’s family is working with Cure Rare Disease to have a custom gene therapy made that has the potential to save Kalel’s life. In order to begin production of this custom gene therapy they need to raise $25,000.
Students from around the Madera County Mountain Communities have created art to be sold to raise the funds to help pay for Kalel’s therapy.
“It is my hope that each school will have 50 participants and our goal is to sell 150 paintings! 100% of the proceeds will go to Kal’s treatment!” Said Kal’s father Rick Hamilton.
Each participating school will have a booth set up at Oakhurst Gift works, 49027 Rd 426, Oakhurst, CA 93644, Sat Nov. 14, 2020 (outdoors, rain or shine ,with social distancing and safety measures) for the community to shop from. All paintings will be priced at $30 (with the option for the purchaser to donate more, of course).
Artwork that does not sell on the day of the event will be posted online (Facebook/local) for sale.
Thank you for choosing to be part of “the village” it takes to raise a child.
A LETTER FROM KAL’S DAD:
We are a family of 4 living in Ahwahnee, California, where we have a small family farm. I (Rick Hamilton) am originally from Ahwahnee, and my wife (Nancy Hamilton) is from Queens, New York. My wife and I honorably served in the United States Marine Corps.
Our son Kalel (7) was born in 2013 at Balboa Naval Hospital while my wife was still on active duty. Our daughter Olivia (2) was born in 2017 after our move back to my hometown of Ahwahnee.
Our son is fighting a terrible disease called Duchenne Muscular Dystrophy (DMD). Due to this awful disease our son is fighting, we have chosen to organize our lives so that every effort we make is a step towards saving his life. Our son has a ton of fight in him and it amazes us every day with the actions he takes to help his body fight.
He insists on taking his supplements every day (29 pills), doing his stretches, getting in his hyperbaric chamber, eating healthy, and being tough during his IV infusions.
We have been upfront about what he is facing from the beginning, and he has taken it like a champ. We like to think that he has a lot of toughness to draw from, the mean streets of New York, mountain living, and 5 Marines in the family. Not to mention he was named after Superman.
Diagnosis
At the age of 5, Kalel was diagnosed with DMD. DMD is a fatal rare genetic muscle-wasting disease primarily found in boys. Every muscle in the body is impacted by an inability to produce a protein known as dystrophin.
Life expectancy is late teens to early twenties, with most who suffer from this disease succumbing to heart or lung failure. Most boys will lose their ability to walk around the age of 10.
There is not a cure for DMD, but we are working hard to change that.
Therapy
Our family began fighting hard for Kalel as soon as we received his official diagnosis at the end of 2018. February 2019, about 2 months after diagnosis Kalel started receiving stem cell infusions. He has been receiving the infusions every 3 months since then. We are hopeful that these infusions will buy Kalel time until a cure is found.
Cure Rare Disease/Currently the focus of our fundraising
This year we began a partnership with a non-profit called Cure Rare Disease. The founder of this organization, Rich Horgan, has a younger brother with DMD. He has recruited world-renowned researchers and clinicians to help develop custom therapeutics tailor-made for individuals who have rare diseases. If Kal can have one of these custom therapeutics made for him, it would mean that his body would begin producing the protein, dystrophin, which he currently lacks. This would mean that Kalel’s muscles would no longer be wasting.
To enable Cure Rare Disease to begin working on a custom therapeutic for Kalel, we need to raise $25,000. Once we achieve this goal, Kalel will be in line for Cure Rare Disease to begin work on his life-saving custom therapeutic. Our work will not be done at this point, but it is a fantastic start to a life-saving journey. Along with Kalel’s custom therapeutic being started, once we raise $25,000, our family will become Cure Rare Disease Ambassadors.
As Ambassadors, we will be responsible for raising $25,000 annually, writing blog posts for Cure Rare Disease, and helping to inform others about the fantastic work they are doing. Each therapeutic takes 2-3 years to create and cost around $2 million.
What we like about Cure Rare Disease:
They openly share their work in hopes of advancing science.
Working alongside insurance companies to help reduce the cost of their therapeutics.
They can do what is right for parents rather than make decisions based on profit.
They are forming partnerships with companies that are critical for developing their therapeutics, which will help to lower the cost.
They are very transparent about where and how donor money is spent.
Thank you, from the bottom of our hearts for your support,
The Hamilton Family
Kalel, Olivia, Nancy and Rick
