A mum who was told she likely suffered from carpal tunnel syndrome after feeling numbness in her right hand during her pregnancy has been given just a few years to live after scans revealed she will soon be paralysed.
Charlotte Parker, 28, from West Berkshire, was diagnosed with amyotrophic lateral sclerosis (ALS) nine months after giving birth and is now trying to create “happy memories” with her young family while there is still time.
The rare condition, a type of motor neurone disease (MND), means Charlotte only has two to five years’ life expectancy during which time she will become increasingly paralysed.
Charlotte, who lives in Thatcham with her fiance George, 32, a mechanic, and their three children, says she wants her 11-month-old son Jimmy to know she was there.
Her friends and family are fundraising so she can afford to take her family to Disneyland in Paris and take advantage of what time they have left together.
“I don’t think you can imagine having to tell your parents at 28 that you have been diagnosed with a terminal illness,” Charlotte, who works as a revenue and debt accountant at an energy company, told PA Real Life.
“At the moment my life is so fast paced that I don’t really have much time to slow down and think about what’s happening.
“Most people think MND-ALS affects older people but it actually affects a wide range of people. It can happen to anyone.”
Charlotte was seven months’ pregnant when she began feeling a strange “numbness and weakness” in her right hand.
“I was struggling to open jars and bottles,” she said.
“Gradually it just got worse and worse and by the time I gave birth to Jimmy, I was considerably weaker.
“Doing day-to-day tasks while trying to learn how to look after a newborn baby was definitely a challenge.”
After flagging the numbness to her midwife, Charlotte was told she likely suffered from carpal tunnel syndrome, a common health condition caused by pressure on a nerve in the wrist.
But Charlotte was referred to a neurologist when she went for a routine checkup six weeks after Jimmy was born.
“He sent me for an MRI in January for possible inflammation in the brain,” she said.
“I think subconsciously at the time that’s when I knew it was something a bit more serious.”
While Charlotte was worried, her results came back and suggested there was no problem with her brain or spinal cord.
Instead of getting better, however, the numbness started to spread to her other hand.
“I kept calling because it started going into my left hand as well,” she said.
“I am still able to move my fingers in my left hand but my right hand does not really work anymore.”
In June, Charlotte was given an electromyography, a medical test which looks at how a person’s nerves and muscles respond to stimulation.
“They put stickers on you and send pulses up your arm,” she said.
“I got called in to see the neurologist quite quickly after that, which is when he advised that he strongly believed that it was MND-ALS.”
I want to do as many days out with the children as possible so that we have those memories all together.— Charlotte Parker
ALS, the most common motor neurone disease, is incurable and causes progressive weakness and paralysis, usually leading to death within three to five years, the National Institute of Neurological Disorders and Stroke said.
Charlotte’s worst fears were confirmed after she visited John Radcliffe Hospital in Oxford in July and was formally diagnosed.
“It’s been a lot to adjust to, especially with a four(-year-old), seven(-year old) and eleven-month-old,” she said.
“To know that there is no cure or treatment that will give me a substantial lease of life.
“It is just going to deteriorate pretty quickly.”
Charlotte broke the devastating news to her family and friends that her illness is terminal.
“My youngest is completely none the wiser and the girls are aware that my hands are getting weaker and that it will move to my legs, but we haven’t gone into the detail of what it means will happen.”
Unfortunately, doctors are unable to say how quickly Charlotte’s condition is progressing.
“Each person’s story is different,” she said.
“It’s such a maze on how one person’s body deteriorates to the next.”
But Charlotte is not letting the diagnosis get in the way of her family plans.
The mum, who does not have life insurance, plans on continuing to work for “as long as possible”.
“I am fortunate that my work provides death in service,” she said.
“If I can, I will try and work for as long as possible so that my partner and children do have something to help them for the next however many years.”
She also plans on marrying the “love of her life”, George, after getting engaged two years ago and falling pregnant.
“I fell pregnant and it just got pushed to the side. I didn’t want to get married nine months’ pregnant,” she said.
“It’s time for us to celebrate us as a couple rather than just accepting that we’re not going to be together for the rest of our lives.
“We have to make good of what we can and celebrate what we do have, right now, rather than just accepting the situation.”
The couple, who recently went on holiday to Pembrokeshire, are also looking to create “happy memories” while there is still time.
“We were on the beach late evening, when it was raining and full of wind, and we were taking photos running in and out of the sea to make memories,” she said.
“I want to do as many days out with the children as possible so that we have those memories all together.
“Even silly things, like being there for Jimmy’s first haircut and taking him to feed the ducks so that we can capture those memories and that he knows that I was there.”
Charlotte’s friends have set up a fundraiser on GoFundMe to help them cover their costs, including a trip to Disneyland, Paris.
“It would be a great trip to have with them,” she said.
“I just want to enjoy my family and do as much as I can with them because there will come a point where even though I’m around, it will be a lot more complicated.”
They have so far raised £11,235 of their £15,000 target.
Charlotte continued: “A huge thank you to anyone who can help and it will go to creating some of the best memories I can with my family before the inevitable does happen.”
To support Charlotte, visit: www.gofundme.com/f/complete-her-wishes-with-her-family
