Northern Ireland mother battling Motor Neurone disease diagnosed months ago talks of hopes in treatment as GoFundMe launched to help young family

See Stephanie’s GoFundMe here

Mother-of-two Stephanie Hutchinson, 34, was dealt the heavy blow of a motor neurone disease diagnosis after the birth of her second child – a baby girl called Sophie in June 2024.

Stephanie, originally from Ballymena but now living in Maghera, said her legs “were playing up” during her second pregnancy with her baby daughter.

"We thought it was probably because of the pregnancy and all would return to normal after she was born,” said Stephanie.

"It was in my left leg first, and my left ankle that was difficult, but my left ankle would have been weak anyway. So we just assumed it was because of the pregnancy.”

Stephanie, a civil servant, added that her first pregnancy with her son (Sammy) had been good.

“My first pregnancy with my son was good – but I had a bad labour,” she said.

"My second baby saw a bad pregnancy and a relatively good labour.

“I had my first boy in June 2021, he is only three-years-old.”

"I had Sophie on May 3 and they were unsure about a section because at that stage they did not know what was going on with me.

"On June 20 I got my diagnosis.”

In spite of her mammoth workload with two children, Stephanie says she “I takes a day at a time”.

"Since I have had Sophie and getting my diagnosis, it has been a shock to the system,” she added.

"I am on a rollator in the house and a mobility scooter outside.

“I can get about in the house. But I fell over 30 times when I was pregnant with Sophie so it was an interesting nine months.

“If it wasn’t for my mum and dad and my husband’s mum and dad and my sister-in-law I would be lost and my husband, Sam, wouldn’t be able to work, which we need to keep things going.

"My son started playschool at the start of September. I need them to taxi me about.”

Stephanie said she has to remain “positive”.

"You have to be positive,” she said.

"I am not a morbid person and have always been jolly and happy so I try to keep that up. But I get easily exhausted – if I had an appointment it would floor me for 2 days.

“There is no real medication for MND but I have my name down for a trial in Dublin and one in Manchester to try to slow it all down. And that is a waiting game.

"It is through the NHS and through the MND Association.

“If you don’t keep a positive attitude you just go downhill.

"I also have a great friend support network like my friend who started a GoFundMe for me to help our wee family get through life with my condition.

"You never know with these trials. You never know what this medication will be able to do.

"The whole country is praying for me because of what has happened. I have lost track of the number of people praying for us.

A GoFundMe started for Stephanie can be found here

Here is the Motor Neurone Disease Association Northern Ireland

What is Motor Neurone Disease?

According to the NHS Motor neurone disease (MND) is an uncommon condition that affects the brain and nerves.

It causes weakness that gets worse over time.

There's no cure for MND, but there are treatments to help reduce the impact it has on a person's daily life.

Some people live with the condition for many years.

MND can significantly shorten life expectancy and, unfortunately, eventually leads to death.