Family and friends of Huntington Disease patient 34-year old Colin Martell advocate to bring him home

(34-year old Colin Martell of Stittsville has early onset Huntington Disease and wants to come home from the long-term facility where he currently resides. Photo: Martell family)

Colin Martell of Stittsville has early onset Huntington Disease which has meant his ability to live independently has diminished. He is currently at a long-term care facility; however, Colin has been struggling emotionally and longing to be closer to his family. He wishes to move back to his parent’s home under palliative care as his disease reaches its advanced stages.

Huntington Disease is a genetic disorder with symptoms usually appearing between the ages of 35 and 55, but the disease can appear in youth (under 20 years – Juvenile HD) or older adults (Late Onset HD). To date, there are no drugs to slow or stop the progression of Huntington Disease; however, there are specific drugs available to reduce some of the symptoms. Research is being conducted in Canada and globally to find promising treatments and approaches to treating HD.

The Martell family setup a GoFundMe fundraiser to help support the cost of legal expenses to fight for the right to move Colin home, as well as home support and any necessary home-living adjustments to improve his quality of life. The fundraiser has already surpassed its goal of $100,000 thanks to so many generous donations. However, the family wants more awareness brought to the public eye about Huntington Disease. It is a disease not as well-known publicly as ALS or Parkinson’s. With 1 in 7,000 Canadians having Huntington Disease, awareness needs to be brought to the attention of more Canadians.

Stittsville Central spoke with Colin’s brother Jonathan Martell, who along with his brother, Alex, and many of Colin’s lifelong friends and his large extended family have come together to organize the fundraiser ”Let’s Bring Colin Home” to assist his mother, Heather McPhee.

Jonathan shared, “we grew up in this close-knit community and with my brothers, Alex and Colin, could be found playing for many hours in Ralph Street Park. We all attended Sacred Heart High School. My Mom is retired, but was the Principal at St. Isabel Catholic Elementary School in Kanata.

“Colin was always a vibrant person. He was the best at everything and any sport he played. He was very athletic, so it is sad to see him as he is. Colin started experiencing symptoms with his balance and a hand bone that felt sprained, but wasn’t.

“Our family has experienced the unpleasantness of Huntington Disease far too much. My brother Alex who is 36 and lives with Mom has Huntington. My father, Peter, who played for the Winnipeg Blue Bombers and the Montreal Allouettes passed away from Huntington in 2016 at only 57.

“Our family calls Huntington Disease the ‘devil disease’ – a combination of ALS, Parkinson’s and Huntington – as it has symptoms from each.”

The GoFundMe donations will be used to cover legal expenses for Colin’s right to transition from the long-term care facility to his family home; home care support to improve his quality of life; and modifications to his family’s home to allow for Colin’s safe and comfortable accessibility. Colin’s Mom will be his principle caregiver as she currently carries out those duties for her son Alex everyday.

Jonathan also added, “we are trying also to spread the word about Huntington Disease and the extremely unpleasant symptoms and outcome for people suffering with this disease. We also want to reassure those who have made donations that any funds remaining after the care for Colin and outfitting the house, will be donated to the Huntington Society of Canada for research.”

On the GoFundMe page the family states: The ‘Let’s Bring Colin Home” fundraiser will allow Colin to live at home where palliative care will be provided from his perspective. Together, we can ensure that Colin’s wishes are supported and that he receives the care and peace he deserves in the place he loves most –home.

What is Huntington Disease?:
The Huntington Society of Canada shares, “Huntington disease (HD) is a hereditary, neurodegenerative illness with physical, cognitive and emotional symptoms. Huntington disease is caused by a mutation in the gene that makes the protein called huntingtin. In people with HD, the CAG sequence is repeated too many times at the beginning of the gene. That causes cells to manufacture a harmful protein called mutant huntingtin. The mutant huntingtin protein causes certain parts of the brain to die – specifically the caudate, the putamen and, as the disease progresses, the cerebral cortex. As the brain cells die, symptoms will appear in each of the three components (physical, cognitive and emotional).”

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