Three generations of our family have been affected by Huntington’s Disease (HD). It began with our grandfather Albert, who was diagnosed with HD at the age of 38. Mary (his daughter) was diagnosed with HD at the age of 28 and Sharon (also his daughter) was diagnosed with HD at the age of 30. The most recent diagnosis for our family is our cousin Luke (Sharon’s son). In 2015, Luke received his results that he too had inherited HD. At the time that he received his results, he was 27.
When our grandfather Albert was diagnosed, there was very little information around, and given his later diagnosis, our family was already well under way. Being un-diagnosed led to unexplained behaviours and people drawing incorrect conclusions. Albert passed away in 1989.
At the age of 20, Lee (Mary’s eldest son), tested negative to the HD gene. Going through the genetic testing was confronting, but a necessary process for him. In Lee’s words it was like flipping a coin and having a 50/50 chance of receiving the gene or on the flip side, being HD free.
Mary stayed at home and was cared for by her partner Mick up until 2004, when it became difficult, both physically and emotionally to care for her at home. When Mary was in the nursing home, Lee visited her every day for 4 years, up until she passed of complications associated with having HD. She died at age 47 leaving behind her 3 children (Lee, Dean and Jasmine). As with Albert, to a complete stranger Mary’s behaviour was often mistaken. Sadly, many people judged with their eyes without knowing the reason for her involuntary movements and behaviour.
Our grandmother Doris, cared for Sharon at home until 2003. Doris continues to visit Sharon in the nursing home 2-3 times daily (and has done so for 15 years), to provide her with personal care, feeding etc, this in spite of Doris’ own ill health.
Along our HD journey, which spans 2 states (NSW & VIC) and 3 decades, we have been blessed to meet some amazing people, lifelong friends and we have a huge and varied support network – all of whom have become part of our extended family.
Our hope by fundraising is not only to raise money for the HD Association, but to also raise awareness within our network of family, friends, colleagues and the broader community. In our experience, unless you know someone who has HD, or a family affected by HD, it is not a widely known disease.
We can only hope that in our lifetime we see a treatment/cure become available and on offer to eradicate and put an end to HD, just as has been done with other previously ‘non-curable’ diseases.
Lee & Kirsty’s Team Heat raised over $12,000 for Huntington’s NSW ACT in the 2018 Walk4Hope.