'My hand went numb - now I've got just years to live and will soon be paralysed'
A young mother has been given a life expectancy of just two to five years after what was initially thought to be carpal tunnel syndrome turned out to be a deadly disease.
Charlotte Parker, 28, experienced numbness in her right hand during her pregnancy, which doctors initially attributed to carpal tunnel syndrome. However, nine months after giving birth, scans revealed the devastating truth - Charlotte had amyotrophic lateral sclerosis (ALS), a rare type of motor neurone disease (MND) that will gradually paralyse her.
Living in Thatcham, West Berkshire, with her mechanic fiancé George, 32, and their three children, Charlotte is now focused on creating "happy memories" for her family while she still can. Her youngest son, 11-month-old Jimmy, is particularly in her thoughts. "I want him to know I was there," she says.
Friends and family have rallied around the young mother, fundraising to help her fulfil her dream of taking her family to Disneyland Paris. They hope to make the most of the precious time they have left together.
The mum was given the shock diagnosis nine months after giving birth (PA)
Charlotte is now looking to make memories with Jimmy (PA)Speaking about her diagnosis, Charlotte, who works as a revenue and debt accountant at an energy company, told PA Real Life: "I don't think you can imagine having to tell your parents at 28 that you have been diagnosed with a terminal illness." Despite the grim prognosis, she remains resilient. "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."
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Motor Neurone Disease (MND) - Amyotrophic Lateral Sclerosis (ALS), commonly associated with older individuals, can actually affect a wide demographic. Charlotte, seven months into her pregnancy, began experiencing an unusual "numbness and weakness" in her right hand. "I was struggling to open jars and bottles," she said.
The condition progressively worsened, and by the time she gave birth to her son Jimmy, her strength had significantly diminished. "Doing day-to-day tasks while trying to learn how to look after a newborn baby was definitely a challenge," she admitted. Initially attributing the numbness to carpal tunnel syndrome, a common health issue caused by nerve pressure in the wrist, Charlotte's midwife dismissed her concerns. However, during a routine checkup six weeks postpartum, Charlotte was referred to a neurologist.
"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." Despite her growing anxiety, Charlotte's results suggested no issues with her brain or spinal cord. Yet, instead of improving, the numbness began 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."
The mum, of Berkshire, has been given between two and five years to live (PA)In June, Charlotte underwent an electromyography - a medical procedure that examines the response of nerves and muscles to stimulation. Describing the process, she explained: "They put stickers on you and send pulses up your arm." The results led to a swift consultation with a neurologist who expressed his strong belief that Charlotte was suffering from MND-ALS.
ALS, the most prevalent form of motor neurone disease according to the National Institute of Neurological Disorders and Stroke, is a ruthless, incurable condition that causes progressive weakness and paralysis, typically leading to death within three to five years. Charlotte's worst nightmares were realised when she received her formal diagnosis at John Radcliffe Hospital in Oxford in July. Adjusting to this grim reality has been challenging for Charlotte, especially as a mother of a four year old, a seven year old, and an 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."
With immense courage, Charlotte broke the devastating news of her terminal illness to her loved ones. "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," she said.
Doctors are unable to predict the pace at which Charlotte's condition will progress. "Each person's story is different," she said, adding, "It's such a maze on how one person's body deteriorates to the next." Despite her diagnosis, Charlotte remains undeterred in her pursuit of family plans. The resilient mother, who does not have life insurance, is determined to continue working "as long as possible". She expressed gratitude for her job's provision of death-in-service benefits, stating, "I am fortunate that my work provides death in service."
Charlotte and George got engaged two years ago but postponed their wedding after she got pregnant (PA)Her goal is to ensure financial stability for her partner and children, saying, "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."
In addition to her professional commitments, Charlotte also plans to marry George, the "love of her life", with whom she got engaged two years ago and subsequently fell pregnant. She explained their delayed nuptials, saying, "I fell pregnant and it just got pushed to the side. I didn't want to get married nine months' pregnant."
Now, she believes it's time to celebrate their love, stating, "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." Emphasising the importance of cherishing the present, she added, "We have to make good of what we can and celebrate what we do have, right now, rather than just accepting the situation."
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The couple, who recently vacationed in Pembrokeshire, are focused on creating "happy memories" while they still can. Recalling a poignant moment, Charlotte said: "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."
Charlotte's ultimate wish is to spend as much quality time with her children as possible, saying, "I want to do as many days out with the children as possible so that we have those memories all together." She said she wants to be present for even the smallest moments, 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."
In a heartwarming display of friendship, Charlotte's pals have rallied together to set up a GoFundMe campaign. The funds raised will help cover various costs, including a dream trip to Disneyland, Paris. Charlotte expressed her excitement about the potential journey, saying, "It would be a great trip to have with them." She added, "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."
The fundraising effort has been met with an outpouring of support, with £11,235 already raised towards their £15,000 target. Expressing her gratitude, Charlotte said: "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."
* This article was crafted with the help of an AI tool, which speeds up The Mirror's editorial research. An editor reviewed this content before it was published. You can report any errors to [email protected]
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