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Raising awareness of Harleston mum-of-four’s incurable disease

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When their mother suddenly fell ill, the Hughes family of Harleston were devastated to learn she had an incurable and progressive terminal neurological illness called MSA - Multiple System Atrophy.

Helen Hughes, 59, of Maltings Drive, had previously been a healthy and active member of the community and had not even heard of the disease before.

Within two years of being diagnosed, she has lost all of her mobility and automatic bodily functions and now finds it difficult to speak and swallow.

Her four daughters - Grace, Martha, Laura and Hannah - have joined forces to support their mother and during March, which is MSA Awareness Month, are organising a series of events at Café No 5 in Harleston to raise the profile of the illness and funds for the MSA Trust which supports families and funds research.

The Hughes family have lived in Harleston for 26 years and Mrs Hughes worked at Café No 5 from the time it first opened, up until her illness took hold. Her youngester daughter, Grace, 21, who has returned home after studying for a degree in Sports Science with Management to be her mother’s main carer, currently works there part-time and has organised fun events such as a pancake day and a bake-off competition.

“It’s really important to raise awareness,” Miss Hughes said. “I want people to recognise the logo and be aware of the disease.”

MSA causes nerve cells in the brain to degenerate and with 4.4 people in every 100,000 affected, it is estimated there are around 3,000 sufferers in the UK.

Mrs Hughes first fell ill in August 2011 and was diagnosed in May 2012. Miss Hughes said: “She was absolutely fine before. She had just driven home from somewhere and walked upstairs the day before, and never walked down again. Everything spiralled out of control quite quickly. She went very quickly into a wheelchair. She was originally diagnosed with Parkinson’s Disease and a broken back. It is quite difficult to diagnose MSA as the early symptoms can be quite like Parkinson’s, and a lot of GPs haven’t heard of it or come across it before.”

There is currently nothing the medical profession can do to slow it down. There is no cure and it is much more aggressive than Parkinson’s with a fast deterioration in health.

“Mum now has 24-hour care,” Miss Hughes said. “There is now absolutely nothing she can do for herself so she has to have assistance with everything. We have a team of seven who come in and I decided I would come home and be her care manager and run the house. My sister, Martha, did the same last year while I did my finals at university. I felt I should help Mum now as she has done so much for us and for me. We are all a very close family, and friends have also been very supportive.

“The hardest thing for Mum now is her speech is going and she finds it very frustrating as it closes you in from family and friends. It is just heartbreaking and what is awful is she is 100 per cent with it and has an incredible memory and good hearing. She wants to join in with everything but her body is trapping her mind. It is the cruellest thing.”

Miss Hughes praised the team of health professionals looking after her mother and said the family were determined to provide as normal a life as possible for Mrs Hughes. “We still take her out shopping and have some theatre trips lined up. We had a massive adventure on Monday, taking her to Harry Potter World. We want to get her out and about. It is quite exhausting but we have to do it to keep things normal.”

Locally there is a support group in Roydon and the Hughes family hope their fundraising efforts for the MSA Trust will help support others affected by the disease.

During March, the Café No 5 events include a raffle, 50p from every special and dessert sold going to the MSA Trust, a Coffee and Pancakes Day next Tuesday from 10am to 3.30pm, and on March 25 the Great Harleston Bake-Off will allow keen bakers to enter their cakes for a prize.

Café owner Jan Pedley is also planning to complete a Wing Walk to raise awareness.

Mrs Hughes said of her daughters: “I am very proud of the support my daughters give me and the fundraising they are doing for the trust, and I am very grateful to Jan and the Café No 5 team for their support for the events this month.”

For more information see www.msatrust.org.uk and to donate online visit www.justgiving.com\cafeno-5

 

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