Belfast Telegraph

Tuesday 23 September 2014

I'm hoping my diaries could comfort others

An Ulster mother whose teenage son died of a rare genetic disorder is hoping to help other parents coping with a terminally ill child by sharing the diaries she wrote during his illness, and in the wake of his death.



Alison Shields, from Kilkeel, has written and published a book called A Mother's Love in Action which is based on the thoughts she poured into personal journals while her youngest child Kyle was dying.

The Co Down boy was just five days short of his 14th birthday when he died at the Northern Ireland Children's Hospice in Newtownabbey on October 13 last year.

The youngster had been diagnosed with mucopolysaccharide disease at the age of three. This is a rare illness, caused by a shortage of a particular enzyme, for which there is no cure. The enzyme deficiency means the body can't break down certain chemicals or waste products.

Mrs Shields (46) said the decision to write and publish the book came about after she passed her journal to the family minister ahead of Kyle's funeral.

"He mentioned a couple of things from it at the service and a few people said to me, 'You should really write a book'," she said.

"I said no, and didn't think much more of it. I later read a verse in the Bible which struck a chord and I thought maybe it would be a good thing to do, especially if it could raise funds for the Children's Hospice.

"The book is a nice tribute to Kyle, a way to honour his memory. But I also hope it will help parents who are facing now what we faced when Kyle was ill."

The book details the time of Kyle's diagnosis, his experience of the Children's Hospice and life after his death. Mrs Shields said her husband Andrew (45) and their sons Craig (19) and 17-year-old Scott were very proud of the book. Proceeds are going to the charity and £5,000 has already been raised.

"We have been doing okay as a family this year because of our strong faith," the receptionist added. "Last year was terrible because of Kyle's death."

The Shields family are supporting the hospice's Lights to Remember appeal which gives members of the public the opportunity to sponsor a light in memory of a loved one on a special Christmas tree.

The appeal culminates in the Ceremony of Lights on Tuesday December 18 which includes a torchlight procession and the switching on of Christmas tree lights in the grounds of the adult hospice at Somerton Road.

Anyone wishing to make a donation should contact Northern Ireland Hospice Care on 028 9077 7123 or visit www.nihospicecare.com

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