‘It has always been Jamie’s wish to go abroad - he’s never left UK’
After being diagnosed with a rare and fatal hereditary condition at the age of 26, Jamie Mercer and his wife Kimberley are trying to experience as many magical moments as possible with their seven-month-old son Noah, including a neverexperienced trip abro
They were just teenagers when they first met, but soon realised they were meant for each other.
Marriage for Kimberley and Jamie Mercer was a certainty.
A lifetime together, however, was not.
The Mercer family, of Hart Street, Maidstone, are very much like your every-day family - they grew up in the town and have worked here for most of their lives.
Their happy family unit was complete last July when baby Noah was born.
But a cruel twist of genetic fate has left new dad Jamie facing a life-limiting disease which rarely strikes in your 20s; Huntington’s.
Having been diagnosed at 26, the incurable disease eventually strips people of functional ability, leaving them bed-bound and unable to speak.
Jamie, now 28, is unlikely to make the age of 50.
So now the family is in a battle against time to raise enough money to go on what could be their first - and last - trip abroad, before Jamie’s health deteriorates further.
Just three years on from being diagnosed with the disease, Jamie, a former workhouse operative, struggles with his mobility, often becoming unbalanced and tripping up.
Part-time Primark worker Kimberley made the decision to dedicate the majority of her time to caring for him after he was forced to quit his job.
The 26-year-old said: “He has become more off balance, and it
has started to affect his speech. Unfortunately, there is no cure for Huntington’s disease.
“We don’t know how long he will have before he is no longer mobile and able to do normal daily tasks himself and loses his independence.
“His symptoms have gradually come on since 2019 and will just progress now unfortunately until he can’t do anything for himself.
“I do a lot for him now due to his clumsiness, which is part of his condition, so he doesn’t hurt himself or put him at risk.”
“Until then we aim to keep building memories and making the most of every moment.”
After the pair welcomed their
first son Noah last July, which they described as their “biggest blessing”, they are hoping to create an everlasting memory and go on their first family holiday, and have asked for the support of any kind donations.
Because of the hereditary
nature of the disease, choosing to have children can be a hard choice, but tests are available before and during pregnancy which screens for the Huntington gene.
Speaking about the decision to try for a baby and get tested,
Kimberley said: “Jamie got tested in 2019 as we knew he had a 50/50 chance of having it because his dad had it, and we wanted to see if we were able to start a family.
“We had put it off until then as it’s a scary ordeal and once he got the results we decided it’s not something we can change, but we can make the best of it and just do everything we can to create lots of happy memories.
“We knew once Jamie had inherited the gene it was 50/50 for our little boy to have it, so we went through testing and to wait 12 weeks for the result.”
Kimberley said for the couple, who met when she was 15 and he was 17, it was the “longest 12
weeks of our lives”.
“It was so hard, but we definitely had the best outcome. We were blessed with a family which we weren’t so sure we would be able to have,” she said.
“We have been together for 10 years and this was one thing we never thought would happen for us. He is an amazing father and partner.”
Kimberley and Jamie got together months after meeting at Kimberley’s aunt’s house where Jamie was staying at the time due to being homeless.
Since his symptoms and condition she has been unable to work as often as she was at the town centre retailer, and has dedicated most of her time to
‘Waiting for results was the longest 12 weeks ever. We have been together for 10 years and this was one thing we never thought would happen for us. He is an amazing father and partner.’
looking after her partner of 11 years.
“I guess I always knew if Jamie had Huntington’s disease I would have to look after him,” she said.
“So when we found out he had it and then the symptoms progressed I just naturally started to look after him.
“I guess when you love someone you do anything for them.”
Speaking about the fundraiser, Kimberley explained one of the couple’s last wishes is to go on their first family holiday abroad.
She said: “It’s always been a wish of Jamie’s to go abroad as he has never left the UK before.
“We did start to save but with
life always getting in the way we worry we won’t get there before he can no longer travel.
“While we are aware that everything in life needs to be earned, I am worried that Jamie may not be able to have as many memories of family holidays as other people.”
Sadly, this isn’t the first time Huntington’s disease has affected the Mercer family.
When Jamie was just a teenager he lost both of his parents, including his dad to the disease, so the family are aware of the devastating effect the condition can have on an individuals and their families.
You can donate at www. tinyurl.com/mercerfundraiser.