Charlotte Parker and fiancé George never could have predicted her diagnosis (Picture: PA Real Life)
Charlotte Parker should be looking forward to the rest of her life with 11-month-old son, Jimmy.
But shortly after his birth, the new mum, 28, from West Berkshire, was diagnosed with amyotrophic lateral sclerosis (ALS) – a rare type of motor neurone disease with a life expectancy of just two to five years.
During pregnancy, Charlotte experienced numbness in her right hand and was initially told it might be carpal tunnel syndrome. But as symptoms progressed, tests revealed the reality was far more sinister.
Just nine months after giving birth, Charlotte, who lives in Thatcham with her fiancé George, 32, a mechanic, and their three children, received the shock ALS diagnosis.
Now, she’s focussing on creating ‘happy memories’ with her young family while there is still time.
‘Most people think MND-ALS affects older people but it actually affects a wide range of people,’ she shares. ‘It can happen to anyone.’
Symptoms of the condition include muscle weakness, twitches, slurred speech and difficulty swallowing and get worse over time. Soon, Charlotte fears she may be paralysed.
Charlotte was diagnosed with ALS and will become increasingly paralysed as time passes (Credits: PA)
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 explains. ‘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.
She 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.’
Charlotte in hospital when her son, Jimmy, was born (Credits: PA)
Initially, Charlotte’s results suggested there was no problem with her brain or spinal cord but instead of getting better, the numbness started to spread to her other hand.
‘I am still able to move my fingers in my left hand but my right hand does not really work anymore,’ she says.
In June, Charlotte was given an electromyography, a medical test that looks at how a person’s nerves and muscles respond to stimulation.
‘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,’ shares Charlotte.
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 has been given between two and five years to live (Credits: PA)
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 and seven-year-old as well as an eleven-month-old,’ she says.
‘To know that there is no cure or treatment that will give me a substantial lease of life. It’s 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.’
CCharlotte is looking to make happy memories with Jimmy (Credits: PA)
Unfortunately, doctors are unable to say how quickly Charlotte’s condition is progressing.
‘Each person’s story is different,’ she explains. ‘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 works as a revenue and debt accountant and does not have life insurance, plans on continuing to work for “as long as possible”.
She also plans on marrying the “love of her life”, George, after getting engaged two years ago and falling pregnant.
‘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,’ she says.
Charlotte is hoping to marry the love of her life, George, 32 (Credits: PA)
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,’ Charlotte says.
‘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.’
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 shares. ‘I want to do as many days out with the children as possible.’
Charlotte’s friends have set up a fundraiser on GoFundMe to help them cover their costs, including a trip to Disneyland, Paris and have so far raised £11,235 of their £15,000 target.
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