Meet Kaelan Carlson, a 10-year-old recently diagnosed with Friedreich’s ataxia, for which there is currently no cure and no treatment.
I met Kaelan when he was 5 years old. He and my younger brother Grant, started their hockey careers together and later became school mates.
Kaelan is the youngest of three boys – his brothers are Taylor and Alex – having just turned 10 at the end of the year. Kaelan is from a huge Hockey family, with both older brothers playing AAA hockey and then Junior A hockey.
Kaelan was diagnosed June 2014 with Friedreich’s ataxia (FA), a debilitating, degenerative neuro-muscular disorder. Only about one in 50,000 people in the United States have FA. There is currently no cure and no treatment, only symptom management.
Here is a fantastic video that better describes what happens in a normal body vs. a FA body. https://www.youtube.com/watch?t=151&v=3WyBnc1_EZI.
Kaelan is not fully aware of the progression of FA and the family asks that people respect his innocence.
Kaelan is just like any other 10 year old. Kaelan enjoys Xbox, likes the show The Big Bang Theory, his favourite school subject is gym, and he enjoys anything that can be done or played outdoors: “dirt biking, dune buggying, four-wheeling, motocross, fishing, sports – like dodge ball, soccer, basketball, baseball, hockey,” he says.
The Carlson Family is choosing happiness. “This is what he’s got; nothing’s going to change that,” his mother Kelly says. “He needs to own this” She says that there is always some good that comes from the bad and he’s got to find it.
This platform holds a special place in my heart, as I have gotten to know Kaelan and his family so much. Being a singer/songwriter, and as Miss Teenage Lanark County I have had the opportunity to spread awareness at local community events about this rare genetic disease.
Ultimately, If I am chosen as Miss Teenage Canada 2015, I would like to become a FA Ambassador at a national level where I can work with FARA, Friedrich’s Ataxia Research Alliance, to to find a cure, as well as improve the quality of life for FA survivors.
This process would start with creating a good standing relationship with FARA, (currently located in Philadelphia); aligning Fundraising campaigns nationally in Canada to FARA’s current events and utilizing the many Social Media Platforms to spread awareness.
One of the biggest problems the FA families are faced with is the fact that it’s so rare. This national platform will allow me to share Kaelan’ story and message of Choosing happiness to all the families affected by this disease and ultimately help raise the money needed to find a cure.
Choosing Happiness has become the basis for a book Kaelan and Kelly wrote together after his diagnosis and are working on a plan to publish it over the next year; it’s not about Friedreich’s ataxia but about a person’s attitude towards life.
Felcia DeRosa is the fundraising and communications program director at the Friedreich’s Ataxia Research Alliance (FARA), a non-profit charitable organization in the United States that helps fund and provide support for research, drug development, clinical trials and scientific conferences related to FA.
The Carlsons are just one of many families from around the world registered with the U.S.-based organization, fundraising monies to channel into research.
“Our scientists feel like this is a solvable problem,” said DeRosa. “We don’t have an approved treatment trial right now but hope to in the next few years.”
The goal is to find treatments that help slow, stop and then hopefully reverse the disease, she said.
The Carlsons’ hope that by sharing their story, they will help change the lives of others with Friedreich’s ataxia by raising awareness about the disease, which will hopefully lead to more funds for research and eventually, a cure.
Because of him, we’ll find a cure one day for everybody.”
Kaelan Carlson is choosing happiness.