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Northern Ireland family relies on charity to pay for Christmas after husband’s motor neurone disease diagnosis

By Lisa Smyth

A Northern Ireland mother of two has told how she had to rely on charity to pay for Christmas after her husband was diagnosed with motor neurone disease.

Tammy Lines received a grant from the Motor Neurone Disease Association (MNDA) to help her cover the cost of gifts for her children after their dad was forced to give up work earlier this year.

Husband Stephen (47), who was diagnosed with the terminal condition less than two years ago, is now wheelchair-bound and his speech is also beginning to deteriorate.

Tammy, mum to eight-year-old Daisy and three-year-old Noah, explained: "It's hard because you just don't know what is around the corner or when things are going to happen.

"You can never plan ahead, that is one of the things that is so difficult about MND.

"Stephen was working up until February of this year but since then he has slowed down. He doesn't have as much movement and he is in a wheelchair.

"It was devastating for Stephen when he had to give up work as he had worked his whole life, from he was 17, so to go from working five or six days a week to sitting in the house 24 hours a day has been very hard for him.

"In fact, it has actually been horrendous for him."

Tammy (33) is speaking out as part of the MNDA's MND Costs campaign, which highlights the financial stress being placed on families after a diagnosis.

There is no cure for MND and the average life expectancy of someone with the condition is between two and five years from the point of diagnosis. It progressively damages parts of the nervous system, affecting many vital actions including gripping, walking, talking, speaking, swallowing and breathing.

There are about 120 people in Northern Ireland living with the condition and last year the MNDA handed out 166 grants totalling £70,000 to people here.

Creea Convery from the charity said: "We have found that two thirds of families use their savings to cope with the extra costs of MND.

"For example, on average their energy bills double after diagnosis.

"They may require specialist equipment and can't wait for these to be provided by the statutory services or they can't face the distress of means testing.

"MND puts them and their families under financial strain and makes it difficult for them to make sure they have a good quality of life to allow them to do the things they want to do. When you are facing a terminal diagnosis, that is especially important."

Like countless other families affected by MND, the Lines family had already been forced to turn to the MNDA for help to make the necessary renovations to the family home in Newtownhamilton, Co Armagh.

"The work had to be done, we simply didn't have a choice," continued Tammy.

"Stephen had to stop working and I was supposed to go back to work after having Noah.

"But I'm now Stephen's carer as there is so much he can't do for himself.

"The charity has been absolutely fantastic as we would just have had to get into debt to pay for the work to be done if they hadn't helped us out.

"The fact they helped us with Christmas is amazing too.

"It's so important that we make as many special memories as possible while we can."

Tammy said that people facing such a diagnosis often focus on the medical issues and do not think as much about the practicalities.

She said: "I have to work hard to make sure that we have enough money to keep going, to keep life as normal as possible for the children.

"I worry all the time. I think to myself, 'What am I going to do afterwards, how am I going to cope?'"

To find out more about the MNDA's services for people affected with the condition, log on to www.mndassociation.org.

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