Friday, June 21, 2013

Terminally ill mum lost her voice two years ago and communicates to kids with eye recognition technology

Emma Fitzpatrick has Motor Neurone Disease but tries to make the best of every day

Brave Emma with her family
Brave Emma with her family

Emma Fitzpatrick is just like any other mum – she loves her two children dearly.
But for the past couple of years they haven’t been able to hear her voice as the 47-year-old lost her speech after being diagnosed with Motor Neurone Disease.

In spite of this Emma and her devoted husband Jonathan still try and make every day a positive one.
People recently became more aware of MND when it was revealed RTE broadcaster Colm Murray was diagnosed with the illness in April 2010.

It was that January Emma realised something wasn’t right.

Jonathan said: “The first year was very slow, in January 2010 she noticed an infection in her voice where there was certain words she couldn’t pronounce properly and she was worried about it.”
MND is a rare neurological condition that affects two in 100,000 people.
It alters the motor cells in the brain and the spinal cord which enable us to move, speak, breathe and swallow.

With no nerves to activate the cells, muscle tissue eventually weakens and wastes away..
Generally, MND patients are given a general life expectancy of between two and five years after diagnosis and Emma has survived almost three years so far.

Jonathan, 53, said: “The progression of the illness was very quick at the beginning but strangely she has plateaued, she’s been the same for quite a while now.”

The couple have been married for 12 years and live in Kinsale, Co Cork with their two children – Rowan, eight, and five-year-old Alannah, who is called Kitty by her mum and dad.
Although MND has robbed Emma of her mobility and speech, she is able to communicate with those around her through the use of an eye-gaze computer technology.

Speaking about the affect MND has had on the children, Jonathan said: “They’re great, they keep us all going, they take the whole thing as normal in many respects.

“Emma can’t speak, she lost her voice a couple of years ago and that’s really tough that she can’t just tell the children how much she loves them or engage with them in that way, with her own voice.
“She can’t lift them up or console them when they’re crying, but they still feel very loved by her and very close to her.

“Emma is really at the heart of everything.”

Despite her difficulties, brave Emma has an online blog called ‘Shapeshifting Emma’ that she writes by using a special computer which reacts to her eye movement.

And it’s so important to her to have this method of communication.

She wrote: “It’s is my life-line and link to my family, friends and to all of you. Without it I wouldn’t survive.”

Jonathan added: “She keeps us all on our toes and talks to all of us with her eyes.

“Emma keeps in contact with people through email and writes her blog, if you’re sitting beside her sometimes she doesn’t need to use the audio, you can read it on the screen.

“It predicts the words because it knows a lot of the words she uses.

“Emma is a great writer the blog gives her a focus and a sense of her own capacity to contribute.
“The one thing with MND is that it robs you of your sense of self-worth and value because everything has to be done for you, so for Emma to be able to write and publish a blog gives her a huge sense of regaining her dignity.

“The Irish Motor Neurone Disease Association [IMNDA] staff are the most amazing people, they have provided Emma with the eye-gaze computer, the equipment in our house, the hoists and the bed.”

The IMNDA relies mainly on charity donations as they receive limited funding from the Government. This means that the IMNDA have just two nurse specialists to attend more than 300 MND patients in the country.

The couple get home-help and agency healthcare because Emma needs to be supported with food.
Jonathan said: “Emma didn’t go for PEG feeding [tubes for eternal feeding] and in a way I think it’s one of the reasons she’s still around because it has kept her swallow muscles still functioning.
“Emma needs to be helped with food three times a day because a very important part of MND is to keep your weight-level up and you need to eat a lot.”

Although Jonathan has to stay strong for his wife and family, he knows that Emma’s condition will continue to deteriorate.'

He said: “MND is unpredictable, you just don’t know what way it will turn.

“It’s really shocking what it does, it’s a cruel disease because people don’t know what causes it and they don’t have a cure.

“You watch your body deteriorate and lose power slowly but surely.”

Even though Emma is terminally ill, she tries to live life to the best of her ability and enjoy every minute.

Jonathan said: “She had a coffee morning recently with the other mums, every Saturday night she has friends by, we have a wheelchair car and we get out as much as we can so we live as full of life as we can.”

He feels that attitude is a key element in fighting MND.

“You need to find ways of enabling yourself to think positively if you can.

Jonathan said: “At first that’s really impossible because it seems like your hit by a tsunami of horrible things and you’re distraught and traumatised.

“But now Emma has found ways – every morning she meditates and listens to music and inspiring words.”

The love Jonathan holds for Emma is obvious and that is one thing MND will never take away from her.
He said: “The fact that Emma can find moments of hope and joy inspires me.

“People need to know about the condition, it’s awful, it’s horrible.

“But those suffering with MND need to know that it is possible to live through it with a quality of life.”

Tomorrow marks the world’s annual MND Global Awareness Day and the Irish association is hoping that members of the public will join in their fundraising efforts to help those with the illness here.
The IMNDA are asking people to Drink Tea for MND by organising a fundraising morning at home, in work or anywhere.

And when you read Emma’s blog, having a few cups of tea seems like a very small thing to do.
Emma quoted Mary Oliver poetry on her blog last week.

And Jonathan thinks the words of the poem she chose speak to everyone, even if she can’t.
“Hello, sun in my face. Hello you who made the morning and spread it over the fields… Watch, now, how I start the day in happiness, in kindness.”

To read Emma’s blog click here and for more information about the MND’s Global Awareness Day this Friday, see  or call freefone 1800 403 403--1800 403 403 FREE