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Co Armagh family open up about living with Huntington’s and fundraising to help others

A County Armagh teenager, whose mum was diagnosed with Huntington’s Disease almost five years ago, is once again raising money to help others in the same situation as herself.

Chloe Hawthorne says her family have received great support from the Huntington’s Disease Association of Ireland.

Last year, the extended family raised over £10,000 for HDANI.

And this year they have already planned to host a coffee morning, run the Belfast Marathon and stage a barn dance!

Seventeen-year-old Chloe lives with mum and dad, Helen and Alan, and sister Sophie, at Redrock, near Markethill.

She and Helen have bravely told their stories.

Huntington’s Disease is rare genetic neuro-degenerative disorder which generally affects both voluntary and involuntary movements, thoughts, feelings, behaviour, communication and swallows.  These symptoms increase over time, progressively getting worse as you get older.

Chloe (right) with Janice

Normally Huntington’s is diagnosed in adults in from 35-40 years, but this is not always the case. Currently there is no cure for this disease. People with HD usually live between five and 20 years with symptoms, which then deteriorates to the point where they are need of full time care.

But everyone who suffers feels the effects differently, with some being more mentally or physically affected; everyone is different. If someone has Huntington’s, there is a 50/50 chance each of their children will inherit the disease.

Helen inherited Huntington’s Disease from her mother, in July 2012.

Now 43, she has been experiencing symptoms, including depression and severe mood-swings.

She said: “I cannot concentrate on more than one thing at a time, such as listening to different people talking, and I can’t remember dates, events and how to get to places, so I must write things down or I won’t remember.

“My balance is affected so I bump into things and hurt myself. I can’t sleep well at night because of the movements in my arms and legs so I am very tired during the day which makes it even more difficult to concentrate and keep my balance so I end up falling asleep during the day.

“HD has a huge impact on my family not least because I can’t do all of the ‘mum’ things I used to. It is difficult because we live in the Southern Trust, and unlike Belfast or South Eastern Trust patients I cannot access a specialist HD nurse.

“Although our GP is very good he cannot provide the specialist services I need. HD is so complicated that you really need to see an expert regularly, especially to help with things like movement problems, speech and medication. Some medications can help one symptom but make others worse so it needs to be reviewed regularly as it can be dangerous.

“It shouldn’t matter where you live when you have a disease like HD but in Northern Ireland it does and it’s totally unacceptable!”

While the whole family have really pulled together to help Helen, her daughter Chloe has become heavily involved with the Huntingtons Disease Association as a member of the youth committee.

Said Chloe: “Coping with Huntington’s is extremely difficult as the condition is constantly changing. However, we have a very strong family and friends to support us.

“Also, HDANI has been a huge help to us as a family. My mum and I attend the Support Group in Armagh which takes places every month. It gives us a chance to ask questions and share experiences and learn from other people in the same boat. It also gets mum involved with meeting new people who suffer from the same condition.

“HD can be very scary as it means lots of changes but my sister and I also take part in special youth events with a counsellor and other young people and that really helps us deal with things.

“I am a member of the youth committing for HDANI and I want to help make a change within the charity and help others in the same situation as myself.

“Unfortunately this year there has not been any youth activities running due to a lack of funding which I think has a negative impact on young people involved with HD.

“These youth events give us a chance to express how we feel with others and also to go away for a day and complete activities that we wouldn’t get the chance to do with our families. We need more funding for these types of event and its heartbreaking that the youth group is disadvantaged due to no funding.”

The family have already taken part in various fundraising events, such as the Belfast Marathon, which they ran in 2015.

Chloe added: “We are planning to complete it this year again. We are holding a coffee morning and craft fair later this month and a barn dance in September to help raise vital funds for Huntington’s Disease Northern Ireland.”

Chloe and Janice, and her husband and sister, and Chloe’s dad Alan are running the relay Belfast Marathon in May in aid of Huntington’s also!

The coffee morning and craft fair will take place on Saturday, March 25, at Collone Young Farmers Hall. For those not familiar, the venue is located about three miles from Armagh, turning off to the right if you are heading from Armagh towards Newry. It will take place from 10.30am until 1pm and everyone is welcome.

There will also be a barn dance on September 9 with the fantastic Ritchie Remo as special guest. More details will be available closer to the time.

Please show your support.

Main Picture: Chloe Hawthorne, with her mum Helen, sister Sophie and her mum’s cousin, Janice, who lost her father to Huntington’s Disease.

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