Related Articles
A mum who has defied medics to deliver a ‘miracle baby’ at Stoke-on-Trent’s main hospital is on a collision course with the Government.
Joanne Cole became one of the first women in the world to get pregnant and conceive with motor neurone disease (MND) when she gave birth to Sebastian at the Royal Stoke University Hospital three years ago.
The 33-year-old proved that sufferers of the rapidly progressing disease which affects the brain and spinal column can cope with the physical demands of nine months of pregnancy. This had previously been doubted by medical experts.
For the latest health news from StokeonTrentLive
Now Joanne has told Health Secretary Sajid Javid to ‘put your hand in your pocket’ and fund targeted research to find a cure for the terminal illness.
The former fitness instructor, from Stafford, is backing a Sunday Express campaign for £50 million Government funding over five years to set up an MND Research Institute to co-ordinate efforts to find effective treatments and a cure for the horrific condition.
She said: “We have waited far too long for anything to be done. It actually feels like we have been forgotten.
“It’s just not fair. A cure is so close and we just need a last push. We are worth it.”
The mother-of-two, who has lost her voice and uses an “eye gaze machine” to communicate, wanted to send a clear message to the health minister: “I would like to say that it is time to put your hand in your pocket and start to put the money where it is needed.
“We don’t have the time to wait around for a miracle to happen. The time is now and MND is not rare.
“So many people are living with MND and it destroys lives and families – so please do something for us.”
Joanne, who does admit she was a “fitness fanatic” while at school, had her first son Harry when she was 20.
A year later she met her partner Stuart, who is now a Royal Mail postman, on a night out in Stafford. She says: “The rest is history. He’s been my rock throughout.”
Joanne first noticed symptoms of MND seven years ago when she had a slight weakness in her left hand which affected her grip.
She said: “I knew that something was wrong because when you are into your fitness you know your body and you know when something isn’t right.
“Over the coming months I started tripping up a lot and then my speech started to slur.
“I also noticed that I would laugh a lot and find it difficult to stop.
“It was not a bad thing but it was new and out of the ordinary.
“One evening I fell down the stairs and I blacked out. That’s when I knew that I needed to see the doctor.”
Joanne was referred to a hospital with a suspected stroke in April 2015. After several weeks of tests she was diagnosed with MND at the age of just 26.
She said: “I was told prior to diagnosis that it could be one of two things.
“MND was the worst case scenario so I had kind of prepared myself for the worst. I had Googled everything but it still felt like a shock when I was told that I was terminally ill.
“I remember crying and sobbing for a short while. I think it was more of a relief to finally know what was wrong with me.”
Joanne added: “I quickly decided that it was not the end of the world and just to get on with it.”
She believes her positivity and having her second son Sebastian has helped her live with MND for more than six years.
“I found out that I was pregnant with Sebastian in May 2018.
“Even though he was not planned I believe that everything happens for a reason. Getting an abortion was never going to be an option.
“Having children after my diagnosis was never spoken about by anyone. I suppose that people don’t feel like it should be an option. I beg to differ because I am living proof that you can.
“I was excited but nervous about entering the unknown. The most important thing is that I believed in myself and I am so proud of that.
“My family were nervous about how my disease would progress but they know that if I want to do something then I will.”
Joanne says this pregnancy was “a breeze”, with no complications or problems: “I actually felt really well and I was looking forward to being a mum again.
“Sebastian is a miracle baby. He has completely changed our lives and given us something to focus on and enjoy.”
Joanne now hopes more women with MND, particularly those diagnosed at a young age, will not be put off starting a family.
She said: “I do hope that other women will think twice about having children. Don’t get me wrong, I know that I am so lucky to have
a slower progression and unfortunately not everyone is like this.
“I was young and I hope that this gives hope to other women living with MND. If you want it enough and believe you can, then go for it.”
If you’re on the lookout for local news, we have you covered with our FREE email newsletter – sign up in the box at the top of this story or click here.
The prognosis for the disease is bleak for many patients, with about 50 per cent dying within two years.
But Joanne has not allowed negative thoughts to affect her decision to bring up two children.
She said: “Not being around to see my children grow up is never going to be an option. I don’t think in this way because I plan to be around for years to come.
“You can’t think like that when you have MND. You have to be positive. I am living with MND, not dying from it.”
Joanne, who has organised charity events to raise more than £15,000 for the MND Association, says seeing a delegation recently deliver a letter signed by hundreds of MND patients to No 10 Downing Street gave her hope.
This letter called for £50million of Government funding for targeted research to find a cure, an ultimate goal which the Sunday Express and a coalition of charities have been campaigning for.
Joanne said: “It has completely given me and so many others a lot of hope. I can’t thank my fellow MND warriors enough for making this happen.
“For having this fight and strength and determination to do this is incredible. I’m humbled.”
Got something to say about this story? Join the conversation by clicking on the green comments icon at the top of this page or the picture box
