A 35-YEAR-OLD Sussex police sergeant with two young children has told how finding out she will develop dementia has changed her life.
Hannah Mackay, the mother of Harriet, six, and three-year-old Georgia, has a gene that means she will develop a rare inherited form of dementia that both her father and her grandfather developed in their mid-50s.
“The day I found out I would develop dementia changed my life, but not necessarily for the worst,” said Hannah.
“I remember just feeling at first like I had been kicked in the stomach when they said it was bad news.
Crying
“I was crying, but I was crying with relief that the process was over.
“I knew then that I didn’t need to be afraid of the unknown any more.”
Hannah underwent tests last year after her father Michael was diagnosed in 2017 with frontotemporal dementia (FTD), the type that killed her grandfather Reg at the age of 57.
She has a rare genetic mutation that prevents a vital protein being produced, and it will eventually cause brain tissue to die and lead to dementia.
The faulty gene is found in about 20 per cent of people with FTD and she learnt she had a 50-50 chance of developing dementia.
It took her about a year to decide to remove uncertainty by undergoing genetic tests.
“Making that decision was the hardest time,” said Hannah, who lives near Haywards Heath.
“Life was changing anyway, not only with my dad but also with me in terms of how I felt and what I thought, and as I became more aware of dementia, more factors came into my decision-making.”
Both Hannah and her father have taken part in a research study to help scientists learn more about FTD and Hannah has joined forces with the charity Alzheimer’s Society in its 40th anniversary year to take part in one of its 36 Memory Walks taking place across the country in September and October to raise funds.
About 850,000 people in this country have a form of dementia, a figure that’s expected to rise to two million by 2051.
Alzheimer’s Society plans to spend at least £150 million over the next decade on dementia research to improve care and find a cure.
It is a founding funder of the UK Dementia Research Institute, which has brought together the brains of six universities across the country and hundreds of world-leading researchers to work to beat dementia.
It has invested £50 million in preventing, treating and caring for people with all types of dementia, as well as understanding how to keep the brain healthy.
It has just announced plans to develop a platform for gene therapy treatments.
Dr James Pickett, head of research at Alzheimer’s Society, said: “Families like Hannah’s are being cruelly torn apart by dementia.
Funding
“We urgently need more funding to help us find a cure so others no longer have to face its heartbreaking impact.”
Hannah made the decision to go public about her condition to raise awareness – and her determination to help find a cure for dementia has been strengthened by the knowledge that her daughters also have a 50 per cent chance of suffering the condition.
“I think about them getting dementia every second of every day,” said Hannah.
“I look at my children every day without knowing.
“Although I know it’s not my fault, I think, ‘They could have it’.
“They can’t be tested until they are 18 and then it will be their decision.
“I want my children to know that if their mummy does get poorly, she did everything she could to make it better – for them, for me and for other people.
“There’s a 50 per cent chance this will personally affect them too so I’m going to do everything I can to stop that from happening.
“At this stage, they don’t need to know great detail – they just need to know that mummy is doing everything to ensure that she doesn’t get ill by doing something positive.
“As my six-year-old gets older, then I will tell her.
“They have both been really, really great.”
Develop
Hannah may start to develop symptoms in ten years’ time or it could take 25 years. “When I get it, whether it’s in ten years or 25 years, I hope to have inspired people to make a difference and help to contribute to research and a cure.
“Then I will die a happy person.”
Team Hannah, which will include Hannah, members of her family and friends, will take part in the Alzheimer’s Society Brighton Memory Walk on September 7. To register for Memory Walk, visit memorywalk.org.uk.
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