Son struck down with same illness that killed dad hopes city research event can help him
23- year- old is living on ‘ borrowed time’ as he continues to fight cruel condition
ASON that was struck down with the same illness that killed his dad hopes Glasgow can help. Harley McDowell, who lives in Munruben in Queensland, Australia, has been battling juvenile Huntington disease for 11 years and is now living on “borrowed time”.
The 23- year- old was given just seven years to live after his diagnosis but “defied the odds” and continues to fight the cruel condition.
It affects his brain which is caused by a “faulty” gene that damages nerve cells causing them to stop working properly.
He inherited it from his father who sadly passed away in 2015 from Huntington’s disease which left his family devasted.
Now he hopes to travel to Glasgow with his mother Katherine McDowell, 43, to attend the Huntington’s Disease Youth Organization( HDYO) Congress in March to meet experts in the field.
The annual event aims to bring the international community affected to come together in person to learn about resources.
It would involve travelling across the world making a journey over 30 hours long and could cost up to £ 25,000.
Katherine hopes attending the major research event in the city may help her son as she could take vital research back home to Australia.
She told the Glasgow Times: “The disease is something I’d never wish on my worst enemy.
“We are absolutely on borrowed time because the juvenile version of Huntington’s disease is way more aggressive.
“At 11 years of age he has absolutely defined odds but time is ticking and it’s getting worse.
“I want to help those affected get better services, I’m fighting my government now to try to implement changes needed.
“I want to attend this annual conference in Glasgow because it is the best of the best. In Australia, Huntingtons isn’t supported as it should be.
“We are raising the funds to go and bring the information back to those affected in Australia.
“That conference is everything to me, I want to help those in need like my son.”
Huntington’s disease causes damage to the brain and gets worse over time.
It can affect movement, cognition, perception, awareness, thinking, judgement, and mental health.
People can start to show the symptoms of Huntington’s disease at almost any age.
Most will develop problems between the ages of 30 and 50.
The condition gradually gets worse for around 10- 25 years, until the person dies according to the NHS.
Around one in 5000 people in Scotland has Huntington’s disease – 1100 people have been diagnosed and an estimated 4000 6000 others, including young people, are at risk of inheriting it from their parents.
Although worldwide research is taking place there is, at present, no cure for Huntington’s disease.
However, many of its symptoms can be managed with a combination of medication, alternative therapies and appropriate support from specialist services delivered by Scottish Huntington’s Association ( SHA) and medical, health, social care providers.
The HYDO event aims to raise awareness of this and will be hosted at University of Strathclyde between March 17 and 19 in 2023 and is one of the largest global events for Huntington’s disease.
Katherine said: “We lost his dad in 2015 from Huntingtons as well, it’s genetic.
“There is always a 50/ 50 chance Harley just got the bad one, it’s been a massive financial emotional
roller coaster for our family.
“Now Harley and I are trying to get to Glasgow to be able to bring all the Huntington’s related information back to Australia.
“He is in the middle stage of juvenile version of Huntington’s disease so the 30- hour trip will have to be done over a longer time.
“He will also require extra support other than me to assist in his 24- hour care requirements.
“If our fundraising goes above what we need, all proceeds will go to HDYO to help others attend this wonderful event.
“It would be amazing to learn and share the information at the event.”
A Huntington’s Disease Youth Organization spokesperson said: “Being impacted by Huntington’s disease, especially Juvenile- onset HD, can be extremely isolating because of the complexity of this disease and the lack of awareness across the globe.
“The HDYO Young Adult Congress is a place for the international community to come together in person to learn about resources, the latest in research and make invaluable connections to others impacted.”
You can donate to Katherine and Harley’s journey via https:// www. gofundme. com/ f/ 2023- hdyocongressat- glasgow- scotland
The disease is something I’d never wish on my worst enemy