A terminally-ill 28-year-old mother is preparing to spend her last Christmas Day with her two daughters.
Jennifer Bell was diagnosed with motor neurone disease (MND) in March after she began noticing problems with her speech.
The single mother, from Milngavie in East Dunbartonshire, was in her third year studying for a degree in learning disability nursing when she was diagnosed and given just nine months to live.
Ms Bell says she will cherish her final Christmas with her children, aged eight and one, who ask her, ‘Mummy when are you going to heaven?’.
Jennifer Bell, 28, with daughters Georgia, eight, and Kacey, one. Ms Bell is spending her last Christmas with her girls after being given just nine months to live earlier this year
Ms Bell is spending Christmas with her daughters Georgia, eight, and Kacey, one. She said: ‘Christmas is just around the corner and the fact I’ll be here is a miracle to me.
‘I feel blessed. We are having a big family dinner for Christmas so we are very excited.
‘I just feel at peace, happy and content that I’m so well and getting to cherish a very special day with my girls and all my family.’
Ms Bell began to notice problems with her speech and was initially told by doctors it was hormones from her second pregnancy with daughter Kacey.
The 28-year-old was diagnosed with MND in March
But as she neared the end of her final year of university, she was diagnosed with MND.
She added: ‘Since being diagnosed my speech is my main symptom which is slowly but surely deteriorating, I also find it hard to chew food.
‘All my symptoms are to do with bulbar muscles in my mouth and throat.
‘Physically my arms and legs are fine and there’s nothing I can’t do now that I could before apart from talk, and I’ve had to adjust my diet to soft foods.
‘I find my strength from my two girls. They are my world and everyday I have seeing them growing up, laughing, telling me they love me, I know they need me.
‘I’ll fight with every breath in my body to be here looking after them for as long as I possibly can.
‘And although it’s an awful situation I’m also very lucky in so many ways.
‘I’ve brought two beautiful children into the world, I’ve almost completed my bucket list, I’ve achieved a university degree, I’ve had the opportunity to do so many things some people never get to do in life and it’s made me into a stronger person.
‘I won’t ever lie down to this disease I’ll fight it with everything I’ve got.
‘At the moment I feel very happy. When I was first diagnosed I didn’t know if I would see my daughter’s first birthday, which I have done.
‘She’s now walking and almost talking. I didn’t think I would see my oldest daughter in her dance competition which I did, and she came first.’
Ms Bell, who was in her third year studying for a degree in learning disability nursing when she was diagnosed, says she will cherish her final Christmas with her children, aged eight and one.
Despite being told by doctors she would only have a matter of months to live, Ms Bell is determined to fight on.
She said: ‘They have said ‘we aren’t talking years, we are talking months’ but I think I might just prove them wrong.
‘My oldest daughter has a good grasp of what’s going on and we are making special memories everyday.
‘Sometimes she will ask ‘Mummy when are you going to heaven?’ and I just say to her ‘nobody knows when God will take us so we have to be happy and make special memories everyday’.
‘I explain to her that we are all going to the same place one day and everyone will be together again.
‘Realistically this will be my last Christmas as bulbar MND prognosis isn’t great but I pray for a miracle every day and there are clinical trials starting soon.
‘The hardest thing about MND for me is my speech – not being able to sing my baby girl a song breaks my heart.
‘Publicly I look fine so when I speak I feel embarrassed because people are so ignorant and hardly anyone knows about MND, so they look at me like ‘what is wrong with her?’.
‘People speak to me like I’m deaf or as if I don’t understand them, which is very insulting considering I’ve just graduated from university and there is nothing wrong other than my speech.
‘Everyone assumes MND is for older people, or pay no attention because it doesn’t affect them.
‘More and more people are getting it younger, there was a ‘profile’ it was men athletic over 60, but now it’s nothing like that.’
Ms Bell has raised more than £15,000 since her diagnosis.
WHAT IS MOTOR NEURONE DISEASE (ALS)?
History
The NHS describes motor neurone disease (MND) as: ‘An uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.’
The weakness is caused by the deterioration of motor neurons, upper motor neurons that travel from the brain down the spinal cord, and lower motor neurons that spread out to the face, throat and limbs.
It was first discovered in 1865 by a French neurologist, Jean-Martin Charcot, hence why MND is sometimes known as Charcot’s disease.
In the UK, Amyotrophic Lateral Sclerosis (ALS) is referred to as Motor Neurone Disease, while in the US, ALS is referred to as a specific subset of MND, which is defined as a group of neurological disorders.
However, according to Oxford University Hospitals: ‘Nearly 90 per cent of patients with MND have the mixed ALS form of the disease, so that the terms MND and ALS are commonly used to mean the same thing.’
Symptoms
Weakness in the ankle or leg, which may manifest itself with trips or difficulty ascending stairs, and a weakness in the ability to grip things.
Slurred speech is an early symptom and may later worsen to include difficulty swallowing food.
Muscle cramps or twitches are also a symptom, as is weight loss due to leg and arm muscles growing thinner over time.
Diagnosis
MND is difficult to diagnose in its early stages because several conditions may cause similar symptoms. There is also no one test used to ascertain its presence.
However, the disease is usually diagnosed through a process of exclusion, whereby diseases that manifest similar symptoms to ALS are excluded.
Causes
The NHS says that MND is an ‘uncommon condition’ that predominantly affects older people. However, it caveats that it can affect adults of any age.
The NHS says that, as of yet, ‘it is not yet known why’ the disease happens. The ALS Association says that MND occurs throughout the world ‘with no racial, ethnic or socioeconomic boundaries and can affect anyone’.
It says that war veterans are twice as likely to develop ALS and that men are 20 per cent more likely to get it.
Treatment
There is no cure for MND and the disease is fatal, however the disease progresses at different speeds in patients.
People with MND are expected to live two to five years after the symptoms first manifest, although 10 per cent of sufferers live at least 10 years.
Occupational therapy, physiotherapy and medicines such as riluzole are used to palliate the effects of the the disease.
Lou Gehrig was a hugely popular baseball player, who played for the New York Yankees between 1923 and 1939. He was famous for his strength and was nicknamed ‘The Iron Horse’
Lou Gehrig’s Disease
As well as being known as ALS and Charcot’s disease, MND is frequently referred to as Lou Gehrig’s disease.
Lou Gehrig was a hugely popular baseball player, who played for the New York Yankees between 1923 and 1939.
He was famous for his strength and was nicknamed ‘The Iron Horse’.
His strength, popularity and fame transcended the sport of baseball and the condition adopted the name of the sportsman.
He died two years after his diagnosis.