Son hit with same illness that killed dad hopes Glasgow can help

Harley Smith, who lives in Brisbane, 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 diagnoses 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 traveling 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 the this annual conference in Glasgow because it is the best of the best, in Australia Huntingtons isn’t supported like 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 1 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.

"To go would not only be great for those in Australia affected by HD with new technology but also another tick off Harley’s bucket list.

"He wants to spend 2023 going to as many places as possible as my family heritage is Scottish as well my maiden name is actually McAlister.

"To take him to a place our family started would be beyond."

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 here.

You can find out more information about the Huntington’s Disease Youth Organization here.