OC Life reader, Rachael Brooking wants to paint the town pink and green in recognition of Huntington’s disease. We thought it best to let Rachael tell her story:
“I lost my mum Frances to Huntington’s Disease in 2003. She was 50 and had been into a nursing home with aged people at the young age of 45. I was lucky enough to escape the gene, having to wait a long period of 6 months to find out the result. My brother Joshua, a qualified computer programmer by trade, has not been so lucky. He is currently 39 and has lost the ability to drive, work and live independently, he is living with my father and has no real social outlet or support as there are so few individuals with HD living locally. I have direct Aunties, Uncles and Cousins who have inherited HD that I know of, my mum was one of 13 children so it has affected our family greatly.
“Huntington’s disease is a genetic, neurodegenerative disorder for which there is no treatment nor cure. Due to the severity of the disease, patients experience physical, cognitive and emotional deterioration which lasts around 10-15 years before death. Huntington’s robs a person of the ability to walk, talk, think, swallow, and control movement. It affects around 1 in 8000 people and symptoms usually occur between 30-40 years of age, but can sadly appear in the juvenile years.
“Huntington's is a hereditary disease - this means a child of an affected parent has a 50% chance of inheriting the disease. In turn, the condition impacts on far more lives than statistics suggest. Young children and teenagers are often primary carers or assist with the care of an affected parent. In doing this there is a sense of isolation and heightened anxiety as they live with the knowledge that they too may develop symptoms in their 20's.
“As it is considered ‘rare’, we are trying very hard to raise awareness this year so that we may obtain greater funds and resources for those affected.
“I want to do my bit to help raise the awareness and some funds for much needed research. As September is Huntington’s awareness month, I am organising a few events – I will be wearing pink and green for the entire month to help create awareness. To do this, I hope to get as many people involved in a ‘walk 4 hope’ which will take place at 12.00pm sat 17th September up the main street. We’re then having a Mad Hatters High Tea at Duntryleague and people can donate through my everyday hero page. https://highteaforhd.everydayhero.com/au/rachael#/?_k=rnejbe
“On Saturday 17th September, I am doing a walk for hope up and down the main street and am trying to get as many businesses involved to help spread the word to help get support for this terrible disease. If you are a fashion store you may be able to dress your window Mannequins in Pink and Green or you could fill your window with pink and green balloons (I am happy to supply them if you need). Or you may decide to have a crazy pink and green staff dress up - anything would be very helpful.”
“Businesses can also make a donation via my everyday hero page above - this can be done anonymously or you may leave your business name and message - any amount is appreciated.”
Rachael is literally walking the walk! Let’s get behind her.