Wednesday 13 December 2017

She's lost two children, now Carer of Year Anne tells of devotion to her 'special girl'

Fergus Black

A MOTHER who has already lost two of her children to a rare and fatal brain disease paid tribute to her "very special little girl", yesterday, who is also suffering from the same disorder.

Mother-of-six Anne McGrath was devastated after her second child, David, died in 1989 from the neurological disorder Canavan disease when he was just one-and-a-half years old.

But more tragedy was to follow when, over a decade later, twins Mark and Tamara were born and shortly afterwards were diagnosed with the same disease.

Mark, who was always sicker than his twin sister, died three years ago at the age of six and a half.

Tamara (10), continues to battle the disorder -- a degenerative brain condition caused by the body's inability to create sufficient quantities of a special enzyme.

Yesterday, Anne's devotion to looking after Tamara was recognised when she was named National Carer of the Year at an awards ceremony in Dublin.


"She's a great little girl, I love her to bits. She is the light in our lives," said Ms McGrath, who was chosen among 800 carers who were nominated by family members and friends, said.

A shocked and "lost for words" Mrs McGrath said that after hearing the stories of the other carers who were also nominated for the award, she never thought she would win.

"I don't regard myself as anything special. I'm just a mother," she said.

Along with husband James, Mrs McGrath from Mullinahone, Co Tipperary, devotes all her time to caring for Tamara who cannot talk or walk and who is fed through a peg feed.

"When I lost David, I was devastated and we thought it would never happen again. Then it did with Mark. I used to just lock myself away, I couldn't talk to anybody about it," Mrs McGrath said yesterday.

"Now when I think of Mark, I just cuddle Tamara and give her a hug. I feel she is part of him. We really don't know what her prognosis is. We just keep doing what we can for her and make her as comfortable as possible."


Also honoured yesterday was 13-year-old Kelley Farrell from Daingean, Co Offaly, who was named Ireland's Young Carer of the Year.

Since the age of nine, Kelley, an only child, has been helping to look after her mother Nuala -- who suffers from a serious back injury. Yesterday, she thanked her father, Sean, for nominating her for the award and said she was "over the moon".

The other carers who were nominated for Carer of the Year included Leinster winner Joan Baldwin from Newbridge, Co Kildare, who cares for four members of her family -- daughters Patricia (42), who has cerebral palsy; Linda (38), who has epilepsy; son William (40), who is autistic; and husband William who is blind.

Dublin nominee Carolyn Akintola from Tallaght, who uses a wheelchair and suffers from a tissue disorder and a heart defect, is the sole carer of her mother Elsie who is also in a wheelchair and is in end- stage kidney failure.

Connaught/Ulster nominee was Niamh Simon from Boyle, Co Roscommon, who cares for her four-year-old son, Tommy, who suffers with a terminal cardiac and neurological illness.

Irish Independent

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