Jordan Adams, a marathon runner from Redditch, carries a heavy burden – a rare faulty gene passed down from his mother that significantly increases his risk of developing dementia in his early 40s.
Man Finds Out He Has Faulty Gene That Will Cause Him To Develop Rare Dementia In His 40s
His mother, Geraldine, was diagnosed with frontotemporal dementia at just 47 years old, a condition with an average life expectancy of seven to 13 years post-diagnosis.
This type of dementia can cause speech difficulties, personality changes, and diminished mental abilities.
Reflecting on his mother's battle with dementia, Adams shared with Alzheimer's Research UK:
"She was only 47. What it did to her was unforgivable. Dementia steadily stripped her of everything that made her who she was."
"From her sense of humour to her dignity, from the loss of her speech and other motor skills."
"And she slept for 20-plus hours a day before finally being permanently bed-bound."
"That was such a young age to have to deal with losing my mum in such a horrible way."
"And I know it’s what’s coming for me. My situation is rare – only one percent cases of dementia are caused by inherited fault genes."
"But dementia is all too common, every three minutes someone develops dementia, and – if nothing changes – they will have the same fate."
In an emotional interview with Good Morning Britain, Adams revealed a heart-wrenching decision he and his partner had to make.
They chose to terminate a pregnancy after learning that the embryo carried the same faulty gene.
"Me and my partner found out that she was pregnant. But because obviously we want to make the informed choice that we don't want it to be passed on to our children," he explained.
"We unfortunately went through a stage of genetic testing for the child and found out that they were a carrier of the gene."
"So we had to, unfortunately, terminate that pregnancy because we didn't want that child to have to go through what we did in our childhood."
"I know not everybody would agree with that, but that's a choice that we made," he added.
However, Adams and his partner remain hopeful about starting a family through Pre Implantation Genetic Diagnosis, a type of IVF that allows for testing of fertilized eggs to determine if they carry the faulty gene.
"And hopefully, I mean, it gives us a 30 percent chance of taking a healthy, happy baby home."
"So you know, the odds are against us, but there is hope that we can start a family of our own and they won't have to go through what we have to go through."