Elaine Tomlinson says she felt ‘devastated’ when she discovered her mother-in-law was suffering from Huntington’s disease.
Previously she had been told that her husband Michael’s mother, Grace Tomlinson, was battling depression during a stay at Middlewood Hospital in Sheffield – but, in reality, she had been diagnosed with the severe, hereditary neurological disorder, which affects movement and behaviour.
Elaine, who lives in Fox Hill, has since experienced years of heartache worrying whether family members are carrying the defective Huntington’s gene, which have only ended now her son Michael, aged 29, and daughter, Kelly, 35, have been given the all-clear following tests.
On Sunday, September 7, Kelly is taking part in the Great North Run in aid of the Huntington’s Disease Association, which supports people affected by the incurable condition.
Elaine said: “I knew Michael’s mother was ill in Middlewood Hospital, but at that time was told it was just depression and bad nerves, only to find out just before having Kelly that my mother-in-law had actually got Huntington’s.
“I was devastated, knowing that there was a 50/50 chance of my child inheriting the disease. Every day after she was born, I was always tormented with the fact she would inherit Huntington’s.”
The fear remained when she had her second child, Michael.
Elaine continued: “I thought about their future and what they had to look forward to. To make matters worse my husband decided to have the test, to see if he had the gene or not.
“The weeks before getting the results were terrible. I couldn’t sleep, stopped eating and cried non-stop.”
The day the results were revealed was ‘heartbreaking’, she added.
“Michael had got Huntington’s. My lovely, strong, fit husband was going to end up with one of the most severe illnesses anyone could have. So now I knew there was even more chance of my children having Huntington’s, and their children too. I was devastated.”
Kelly said the illness has wrecked both her dad and his sister Deborah’s lives.
“It’s a horrible illness, it’s so sad. I catch myself thinking about my Aunt Deborah sometimes and I end up in tears.
“She is still young and you can’t talk to her anymore. When I visit her, really I’m just going round, having a cup of tea and watching her. She’s not the same at all. She can’t stop doing jerky movements.
“Deborah and my dad are very proud people – they had always been very fit, but they can’t do that now.
“Some people have heard of the illness and understand it as something like Parkinson’s disease, but there are drugs and treatments for that, which there aren’t with Huntington’s. On our side of the family the disease is finished, it can’t come back, but I do worry about my cousins and their children.”
Kelly decided to have the test as she wanted to have a child of her own. She now has a daughter, Alexandra, but said if the result had been positive, she would have seriously considered an abortion. Elaine said: “One of the greatest things ever happened – she hadn’t got the gene. It’s a big decision to make up your mind whether to have children or not.
“But Michael had the test after his first son, and we were delighted – he hadn’t got the gene, either.
“All the heartache my family and I have suffered is over – we can live our lives without the worry of ending up with Huntington’s.”
Kelly, who works as a nursery nurse, said she felt ‘scared and nervous’ about run in Newcastle.
“I’m excited and I am looking forward to it – I love running. I’m fed up of there not being anything out there for Huntington’s.”
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