Harley’s ‘significant’ meeting with Penny Mordaunt ‘gives visability to a community where people can feel overlooked and unsupported’
Along with his mum Vanessa, Harley, 28, met with Ms Mordaunt to talk about the issues faced by families affected by Huntington’s Disease (HD).
“The Huntington’s Disease Association (HDA) have been encouraging people to contact their MPs about all things HD, so I did,” Vanessa told The News.
‘Meeting with Penny is significant for the HD community. It is giving visibility to a community where people often can feel overlooked and unsupported.
“I was so grateful for her taking time out of her busy schedule to meet with me and Harley.
“I would encourage others to contact their MP if they are affected by HD because the more we talk the more we can effect change.
“At an event in Westminster in May, MPs were invited to learn more about HD and make a pledge to do what they can for their constituents.
“Penny attended that event and has pledged to do what she can to help people impacted by HD.
“Penny has already contacted the Department of Health of behalf of her constituents and is keen to support further.
“She was attentive to the issues affecting families and what is needed to ensure that people with HD and their loved ones do not suffer any more than they do already because of the impact of this horrible disease.”
Harley presented Ms Mordaunt with a “Sybil On Tour” felt dog, one of hundreds made by Jackie Harrison, a Yorkshire mother who has lost three close family members to HD.
“She uses these to encourage people to start conversations about HD and raise awareness,” explained Vanessa, from Port Solent. “Penny graciously accepted this gift as a way of further supporting HD families.
“She joins a small number of other MPs and a host of celebrities and ordinary people who also have a Sybil dog.”
HD is a genetic condition passed on by a faulty gene and any child of a parent with the faulty HD gene is at a 50:50 risk of developing HD themselves.
Age of onset is typically 30-50 years of age, but can be later. Earlier onset is called Juvenile HD.
There are around 8,000 people with HD and an estimated 32,000 plus at risk in the UK.
Symptoms of HD are complex and include mental health issues, behavioural changes, irritability, involuntary jerky movements, mobility issues - ultimately leading to loss of mobility - swallowing difficulties, loss of cognitive function and more.
There is currently no cure but with ongoing cutting edge genetic research HD is often considered the most curable incurable disease.
HAD have been campaigning for NICE (National Institute for Health and Care Excellence) to issue specific guidelines for HD in line with other neurological conditions like Alzheimer’s and Parkinson’s, to ensure that people can expect good quality standards in care and support and that services are responsive and adaptive.
“These standards should also serve to prevent ill health alongside promoting and protecting good health,” said Vanessa.
“As a progressive degenerative neurological condition, ill health in HD is not preventable. However, it is possible, with the right care and support, to promote and protect good health so that people with HD and their families can have a good quality of life while they can.
“Sadly, in June, NICE rejected such guidance being issued as HD is not considered a ‘priority’ at this time.’
Harley has previously featured in The News regarding his fundraising. Last year, for example, he completed 50 challenges in as many days.
“Harley does lots of fundraising and awareness for the HDA with my support and has in recent years raised in excess of £4,000 for them.
“Later this year he is leading a team of runners in the 10 mile Great South Run to raise funds for Huntington’s Disease.
“He will be completing this on his Alinker walking bike as he did in 2019 and could even smash his own Official Guinness World Record in the process.
“All this is in addition to overcoming the challenges of his disabilities including being an amputee, autism and Tourette’s.”
Harley set a world record for the fastest 10 km on a seated tri-wheeled walking bike - is 1 hr 9 min 11 sec - in Portsmouth in October 2019.
He also completed the 10-mile Great South Run in 1 hr 54 min 26 sec, breaking the 10K record for a seated tri-wheeled walking bike in the process.