QUEENS Park resident Stefan Thomsen will use his two feet and a heartbeat to run more than 10km, blazing the trails of Dwellingup on August 19 to raise money for muscular dystrophy research.
Mr Thomsen was motivated to fundraise after learning that his two-year-old nephew Ari Phillips has the condition.
In March this year, Ari was diagnosed with a rare form of muscular dystrophy called LMNA and is one of only two people in WA to have this type of muscular dystrophy.
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READ NOWMr Thomsen is taking part in the Mighty Jarrah Trail Run to support people such as his nephew living with muscular dystrophy.
He said when he first heard about Ari’s illness he was shocked and then his emotions turned into sadness.
“I want to help make a difference for him and other families suffering with this disease.
“It is almost like grieving coming to terms with what lies ahead. Emotions come in waves; some days you are happy and positive and other days you feel down.”
He said his nephew, who is unable to crawl and has difficulty lifting his head, had the ability to light up a room and had a great sense of humour.
“Ari is always smiling. Everyone falls in love with him. He has a friendly outgoing nature and is inquisitive, intelligent, bright and loving.
“He always asks if people are OK. Even a sneeze triggers him to ask ‘are you OK’.”
While there is no cure for the disease, Mr Thomsen said regular physio and occupational therapy helped maintain muscle structure in people with the condition.
“Ari most probably will never walk and his large muscle groups do not function properly.
“He will require care for the rest of his life and is awaiting his first electric wheelchair. We pray that they will find a cure for muscular dystrophy in the near future.”
Muscular dystrophy is a genetic neuromuscular condition where muscles slowly degenerate and weaken.
Approximately 700 to 800 people in WA are affected by the condition, and an estimated 20,000 in Australia.
To make a donation, visit https://traildayformdwa.everydayhero.com/au/Stefan.
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