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Lydia Benns avatar
Lydia Benns

Lydia's Tough Mudder 5K page

I am raising money for Huntington's for Huntington's Disease Association because It is in memory of my colleague Dan, age 29.

110 %
raised of £100 target
by 7 supporters
  • Event: Tough Mudder 5K

Huntington's Disease Association

HDA England and Wales exists to support anyone who is affected by Huntington's disease. It pursues the best possible care; provides training & advice to families and professionals; raises awareness; and promotes research towards better treatment and ultimately a cure.

Charity Registration No. 296453


Thanks for taking the time to visit my JustGiving page.

In May we lost our colleague and close friend Daniel Elliot Walsh, aged just 29. Dan was a big character on our team and his passing has been sorely felt by all of us. In his memory we have arranged for a number of events for which we hope to be able to raise money for Huntington’s Disease Association. As someone affected with Huntington’s disease in different ways throughout his life, this cause is one that was very close to Daniel.

Here's Dan's very touching and personal story.............

From my earliest memories I only knew my mum with the symptoms of Huntington's Disease. I was young and I didn't really understand, I only knew my mum wasn't very well. I remember being in primary school and hearing other children making fun of her movements when she came to pick me up. This mocking only became worse if she arrived showing injuries, such as the time she arrived wearing a sling as she had fallen over. Even at such a young age it hurt to hear these comments said about my mum, a woman I loved so much. My parents broke up when I was 5 and with the help of carers and my dad who visited every evening, my mum did an admirable job of raising me, my brother and sister in increasingly difficult circumstances. Just after I was born my mother fell pregnant again. This was around the time she was diagnosed with HD, and the decision was taken to get the baby tested. Unfortunately, the test returned a positive result and my parents had to make the difficult decision to terminate the pregnancy. These awful events occurred at the same time as my mum’s best friend lost her battle with cancer and led to my mother falling into depression which caused her condition to deteriorate. I witnessed this deterioration throughout my childhood, until she was taken into a care home, where she stayed until she passed away at the age of 37. That is a day I will never forget. Me, my brother and sister had been sat down by one of my mums carers a week before and were told to expect the worst. My dad called me and asked me to come to his flat which was across the road, he sat me down on the sofa and began… you know your mum’s not been very well... I didn’t let him finish, instantly bursting in to tears, I was 9 years old and felt like I’d been hit by a bus.

In the years since, my brother decided to get tested for HD and was thankfully confirmed as clear. My sister on the other hand, was never tested, she’s put it to the back of her mind, an approach taken by a lot of potential sufferers. Knowing I had a 50% chance of inheriting HD, I decided to bite the bullet and get tested.
I discussed it at length with my GP who was very cautious in ensuring that I was making the right decision. The tests were conducted at the Genetics Clinic at Northern General Hospital in Sheffield, and included physical, mental and blood tests. I was told after the physical and mental tests that it was highly likely I had HD, but I didn’t believe them and decided to wait for the blood test results to come back.
Wednesday, 22nd March 2016 – results day. I wasn’t too nervous until about 5 minutes before my appointment when a wave of dread engulfed me and I began to feel ill. The doctor cut right to the chase and told me I was positive for HD. I looked back at my life and felt there had always been something wrong with me. I had recently lost my job and felt my life was falling to bits and there was nothing I could do to stop it.
I was able to get through this tough period with the fantastic support of my girlfriend, family and friends. Telling my dad was one of the hardest things I’ve done, but he has always remained positive and constantly tells me about any new trials or research taking place around the world. There is currently no cure for HD, but scientists say it is only a matter of time. I am now 27 and have to be assessed annually for any deterioration. Although there are thankfully no signs yet, I have enrolled on to a list for clinical trials. I have done this not only to benefit me, but for other sufferers too and to hopefully give scientists a greater understanding of HD and other neurological diseases.

Tough Mudder is the first event 

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