Monday 27 May 2019

'She's always smiling... she's my wife, the superwoman' - Mother-of-two battling motor neurone disease

When Stephanie Moody was diagnosed with motor neurone disease, she was devastated. Her husband Norman tells Joy Orpen their passionate hope is that, one day, a cure will be found for this life-limiting condition

Stephanie and Norman Moody. Photo: Tony Gavin
Stephanie and Norman Moody. Photo: Tony Gavin

Stephanie Moody (nee Whittle) grew up on a farm in Clonsast, a pretty but remote townland near Portarlington, Co Laois.

It was an idyllic childhood, given she had loving parents, the run of the family farm and the company of six brothers and sisters.

However, looming over them was a dark cloud: Cecil Whittle, one of Stephanie's uncles, passed away on June 17, 1974, the very day she was born. He (and Fred, one of his brothers) died from motor neurone disease (MND), a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord.

But given that there is a genetic link in only 15pc of cases, the matter was relegated to the back of the minds of family members, leaving them free to get on with their daily lives. After school, Stephanie trained as a childminder. She then worked as a nanny for various local families. In time, she met Norman Moody, a forestry worker, and they fell in love.

Norman remembers those early days. "I loved her smile and sense of humour - and still do," he says. They married and have two children, Lauren (19) and Dean (16) and live in an immaculate, comfortable, artistic bungalow, not far from the farmhouse where Stephanie grew up; her mother, Rita Whittle, still lives there.

There is no doubt whatsoever that the Moody family is a loving and united one. Which is just as well, because four years ago, things started to go very wrong. At the time, they were preparing to celebrate Stephanie's 40th birthday. That's when she noticed a weakness in her hand and a twitching in her arm. So she went to her doctor and mentioned that two of her uncles had died from MND. "The initial tests, including an MRI scan, failed to get to the bottom of the problem," explains Norman. "So we went ahead with the birthday party for Stephanie anyway, without mentioning our concerns to anyone."

In September 2014, Stephanie had further tests, and finally a diagnosis of MND was confirmed by a renowned consultant neurologist in Dublin. When asked about that terrifying diagnosis, Stephanie can only shake her head slightly, her lips quiver, while tears run down her soft, pink cheeks.

She tries to explain what effect that pronouncement had on her, but the words she utters are difficult to decipher - already MND has robbed her of the ability to speak clearly. Norman explains that it was a very difficult time for everyone involved. Stephanie's much-loved dad had died the year before, while their daughter was in the throes of her Junior Cert year.

"We couldn't tell Lauren immediately," explains Norman. But a time did come when they had no option but to break the news to both children that, in all likelihood, their mother's time on this Earth would be cruelly cut short. Norman says it was "shockingly hard", the most heartbreaking thing they have ever had to do. But after that, Stephanie soldiered on, and managed to keep things mostly under control until May 2017, when she had a bad fall.

"She fractured her jaw and lost some teeth," explains Norman. "She was taken to hospital in Tullamore and then she was referred to Dublin for specialist treatment." The upshot of all that was that Stephanie had to become a wheelchair user, while it also became clear that modifications would have to be made to the house. Ramps front and back were needed, while the two bathrooms needed to be made accessible. All of this cost a good deal of money.

"The council would probably have agreed to make those changes," says Norman, "but because they don't have enough funds, we'd still be waiting for the work to be done, and we just didn't have that time."

According to Maeve Leahy of the Irish Motor Neurone Disease Association (IMNDA), there are currently 370 people in Ireland living with the condition. "MND is often referred to as the 1,000-day disease, as most people die within 1,000 days of symptom onset," she explains. "At the IMNDA, we strive to ensure that each individual member receives the care and support they require to live as active, independent citizens."

So, with time at a premium, friends and family members got together and began to fundraise. A raffle, a flower-arranging demonstration and an exhibition, titled Painted Love, generated over €33,000. This meant the modifications to the house could be done, an accessible vehicle was bought, while the remaining funds went to the IMNDA, which relies on the public for a staggering 82pc of its funding.

As Stephanie's dexterity and mobility decreased, the family has had to take over most of her chores. "I've had to learn to cook," says Norman. "Stephanie used to stand behind me, making sure I did things right, cracking the whip. Now I like cooking. All this has also taught the children to be more independent."

"They both cook well," quips Stephanie, beaming as always.

Fortunately, for all concerned, Rita is able to be with her daughter on the days when Norman is at work. "I'd have to give up my job if it wasn't for her," he says, "and then things would be even harder."

Stephanie makes it very clear that we mustn't neglect to mention her sister Wendy Gillis, who makes the journey from Wicklow every week to be with her.

What is clear is that the Moody family is putting a brave face on a very difficult situation. "We are devastated by all this," says Norman. "We married fairly young and planned to travel when the kids were grown up. Now all that has fallen through. It's very, very hard, especially for the children. But in spite of everything, they are doing well in their studies."

As for his wife, he says, "I think she's fantastically brave. She's always smiling and doesn't allow herself to get too down. Superwoman couldn't even come close to Stephanie.

"All we can do is push on, one day at a time. I just hope that in time they will find a cure, or some way of stopping the progression of this illness."

With that, he points to a photograph of the four of them on a cruise in the Mediterranean in 2016. "We went for our 20th wedding anniversary," he says, "and renewed our vows on the ship. Then we had a lovely dinner at the captain's table, and that was so nice."

June 21 is Motor Neurone Awareness Day. The IMNDA invites the public to host tea-drinking sessions over the next few weeks to raise funds for the organisation. Tea packs are being sponsored by SuperValu. For more information, tel: (1800) 403-403, or to make a donation, text MND to 50300

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