My family is one of many across the world that is impacted by the curse that is Huntington’s Disease (HD). Since I was quite young, I have seen the impact this horrendous illness has on not only the person with the disease but their family and friends. However, it was only over the last few years I really appreciated the level of care someone suffering with HD needs. I have seen my Dad slowly deteriorate with the illness and the impact it has had on my Mum (Dad’s Full time carer). A couple of years ago my Mum had to have an operation which meant for a few weeks she could not care for Dad. She spent a long time looking round places where my dad could go for respite care just for a couple of weeks. This proved a lot more difficult than expected and although there are some (not many) HD specialist places around they can be very expensive. Dad ended up going into a care home, this was not successful ☹ care homes are not set up to give 1-2-1 care or to deal with the range of symptoms seen with HD patients, so we ended up bringing dad out early and between my Sisters and I supporting my mum in caring for him.

Unfortunately, not everyone is in a position that they have other family members around to support in times like this, or have a way of simply getting a break which is why I believe this Charity is so important to care for carers and give them the support they need with the peace of mind that their loved ones are being cared for appropriately, by people who really understand their needs. This along with the proposed Hub’s built onto the respite centres giving the wider HD family a place to meet, to talk and to support each other through the many different challenges we must face and to find out what professional help and support is available by who.

Hi I’m Ian.

My link to Tony, and the rest of the Lomas family, is through marriage. I have been married to Tracey, Tony’s sister, since 2006 and we have a wonderful son called Eoin.

I met Tracey in 2003 after we joined the Royal Navy as medics and as the saying goes ‘the rest is history’. I am currently still serving as a Petty Officer while living in Taunton however I am due to leave within the next year meaning I can do much more to help support and build the charity.

Tracey was very honest with me early on about Huntington’s disease (HD) as she wanted me to know ‘what I was letting myself in for’ although at the time it was hard to understand the extent of a disease I’d never experienced. Their families’ diagnosis was something she lived with every day and her 50% chance of inheriting it were odds she felt needed to be understood early in the relationship. It was a tough conversation for her to have thinking she knew the fate of her future, explaining her feelings and plans for a situation there was 50% chance of happening but we worked through it together and there was never a question of me sticking around or not, she was ‘stuck’ with me if she liked it or not! We were fortunate to find out a few years ago that Tracey has not inherited the gene and would not develop the disease. There is no celebration for these results though as it hasn’t changed the odds for other family members, it is still very much prominent within he family and will be for many generations to come.

At the time of meeting the family, Adrian (their dad) had no symptoms, however over the years I’ve observed the slow progression of the disease and the immense impact on those around it. At the same time I’ve also seen it take other members of the family including Adrian’s two younger brothers Martin and Kevin with extremely different effects resulting from HD. The best description I’ve heard is that HD is like a combination of Parkinson’s, Alzheimer’s and motor neurone disease (MND) all rolled into one… it just doesn’t seem to be quite as well recognised or supported.

To us Adrian is still Adrian, dad and grandad, with his funny (and sometimes quite mischievous) side, but the things missed most by us are his independence and ability to be the ‘head’ of the family. The biggest aspect I have witnessed is the impact on the family to keep things going with very little help from outside agencies, people who really know how to work with patients of this nature. There is no textbook method of care, no ‘one size fits all’ and if it wasn’t for the extended family and wonderful friends, in this experience, Gill would not be able to physically cope with the demanding situation put upon her, a situation proven when she needed an operation and subsequent rest time. And was very much let down by a nursing home and the care system and without the help of family the impact of this would have been much worse.

It is important for the patient, families, carers and friends to be able to come together in a safe environment where they can socialise with others in a similar situation, have training or just a good old rant in a place of support without judgement. The respite centres are an incredible idea which would not only enable families to do this but to rest knowing their loved ones are being cared for properly and allow the time spent together to be more about the ‘quality time’ without costing the earth.

Hi Guys! I’m Miles Monaghan a graphic designer based in Manchester. Since a child I have seen first-hand how Huntington’s Disease has affected close family members. My Granddad was unfortunately a HD sufferer and passed away from the disease 6 years ago. Not only does the disease affect the sufferer but it has a severe impact on the family around. My Nana became my Granddad’s full-time carer and provided the highest calibre of care for my Granddad. The emotional stress and physical demand meant my nana lived off one hours sleep a night for several years. Seeing the strength and love my Nana had to care for my Granddad was not only incredible but very inspiring. Since losing my Granddad to HD I have had a desire to help fight against this cruel disease. This is why HD Livin’ is very important to me and close to my heart. Anthony and myself are actually cousins so when Anthony told me about this fantastic idea, I jumped at the opportunity to get involved. We have set ourselves some incredible goals! £1 million pound is an astronomical number but with the help and support from everyone we are more than confident we can accomplish these goals and make a difference to the families that need it.

In the words of the great and powerful Nelson Mandela,

“It always seems impossible, until it’s done”.

I joined HD Livin’ as the Treasurer, to support my Son & Founder Anthony Lomas. Having cared for family members with HD for the past 35 years, I know first hand how difficult it is to find the right Respite Care and Support.

I undertook my professional accountancy training with PCC in 1998. Alongside a number of finance roles my employment includes WRNS, Cornwall Social Services, Charity-Independence SW, and working in the hospitality industry. Currently I am Treasurer for Huntington’s Disease Association (HDA) Devon and full time carer. I am a positive person who enjoys working with people and being part of a team. I enjoy spending my free time walking especially with my family and friends.

I’m proud to be using my skills to support the wonderful work of HD Livin’