Support worker has had 8 family members die from MND

A SCOTTISH support worker has been left devastated after eight members of his family died of Motor Neurone Disease.

Ali Berry is raising awareness of MND

Ali Berry, from East Kilbride, lost close family members including his dad, sister, gran, and a 17-year-old cousin to the debilitating illness as the family carry a deadly gene.

The 45-year-old will now take on a charity challenge to honour his father who passed away at 45.

He has also had genetic testing to discover whether he, or his young children, carry the MND gene.

Mr Berry said: “My cousin Emma, who was only 17-years-old, caught us all really off guard. She was so young. Her passing came just after that of my sister, Aileen, and my mum who passed away from cancer at much the same time.

“I was so preoccupied helping care for them, looking after my own girls, maintaining a job and finding out whether I had the gene myself I just didn’t get a chance to know her. It really echoed the guilt I have felt so often with all of these losses.

“I wish I had said and done so much more with them all. It was just sometimes easier not to look. I have so many regrets on this front.”

Ali and his dad, who passed away from MND when he was 43, had always talked about doing the West Highland Way together, but never got the chance because of the disease.

Now the Support Worker from South Lanarkshire, is set to undergo the gruelling challenge of running the 96 mile course in just 24 hours, to raise money and awareness for MND Scotland, on 2nd July.

Ali, who is married to Lisa and has three children - Alyssa ,14, Abigail ,12, and Joseph ,4, knew that MND was genetic in his family. He was determined to get the test to find out if there was a possibility he could get the disease and more importantly if there was a chance his children might get it.

He said: “The process itself took six months, however this is much shorter than usual. The genetics consultant was able to fast track my results because of our family history.

“People might find this strange to believe but I actually enjoyed the whole process. It was the only part of my life I seemed to have any control over at that time. I was convinced I had the gene because I had been suffering from a bad leg… I just thought that was the start of it.

“When I was told by the consultant, “You don’t have the gene,” the statement just kind of hung in the air for a second or two, as did I. I was just not expecting it at all. A lot of guilt comes with not having the gene. I knew I had to tell my dying sister that I dodged the bullet. But there was obviously a huge sense of relief too. I, by sheer luck alone, have managed to avoid the gene that has taken so much from my family as a whole.

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“This luck means my three children will not have to live in fear of it playing a part in their lives.”

Mr Barry said his wife was thrilled after hearing the news.

He said: “When I did tell Aileen the news, I knew without a doubt that she was even more pleased about the results than when I told my mum. A tear quickly became a flood and I eventually resigned my head to her lap and howled. This was the first (and last) time I had cried in front of her.

“Aileen once told me that to gain an insight into having MND you should try and lie absolutely still for even just an hour. Do not move a muscle, no tending to itches, no turning, no relieving of numb limbs. Even after this insignificant period of time it is an alarmingly unpleasant and uniquely painful experience.”

Since MND has caused so much sorrow for him and his family, Ali has decided that he wants to do something positive in return. His nephew will be filming his West Highland Way journey, from tough training sessions to the exploration of his family history with MND, and to the final hurdle of crossing the finish line.

He said, “Although I never had the chance to do the West Highland Way with my dad like we’d always hoped, I know it would mean the world to him that I am doing it now. I’ve done it before but this time I really want to challenge myself and do it in 24 hours for him. It took me a long time to get to this point but now I want to spread as much awareness and raise as much money as possible for MND Scotland. This is a huge challenge for me and I’m sure I’ll moan a lot along the way, but I need to do something to help. This is it.”

Iain McWhirter, Head of Fundraising and Volunteering at MND Scotland said, “Ali and his family have endured so much suffering from MND. Only 5 per cent of cases of MND are known to be genetic; however we still have a lot more work to do in finding out more about how genes can affect it. That’s why it is so important that we continue to fund vital research into MND and it’s supporters like Ali that allow us to continue to do this.

“This is the first time we’ve had someone do this incredible challenge for us. Ali’s got tonnes of enthusiasm and motivation so we have no doubt he’ll make it to the finish line. Good luck Ali!”

He added: “If MND has affected your life, MND Scotland is here for you. We will support you and your family through this difficult journey in any way we can.

“We can provide one-to-one counselling, support groups, complementary therapy, a loan of our communications equipment, benefits advice and more. Take a look at our website to find out more about the ways we can help you and your family – www.mndscotland.org.uk.”

You can follow Ali’s challenge and show your support by visiting Ali’s Facebook page at www.facebook.com/AliBerryMND.