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When our third son, Kyle, was born on 18 October 1992 we were thankful that we had another healthy son to complete our family. It transpired that our illusions were to be shattered four years later when Kyle was diagnosed with MPS III Sanfilippo Disease. It was a relief to know that there was a reason for his delayed speech and failure to ‘potty train’ never mind the severe behavioural problems. However, we were also devastated to learn that our extremely active, boisterous four year old would only have a life span of about fourteen years.
Those early days now evoke many happy and funny memories although at the time they were often a source of extreme embarrassment. This included Kyle eating the contents of ash trays in hotels, capsizing plant pots in waiting rooms, attempting to empty the shopping trolley as quickly as I filled it and lobbing items in all directions regardless of who was in the firing line.
As the disease progressed Kyle was no longer the uncontrollable child he once was. He lost his speech and the ability to run, jump and walk. He started to have seizures, his swallowing deteriorated and following a videofluoroscopy he had a gastrostomy in August 2004. Throughout this period Kyle still remained a happy little boy who enjoyed and loved attention and would often smile and laugh as his brothers entertained him. Kyle retained his love of music although his taste mellowed over the years and he greatly enjoyed his multi-sensory station, as the musical vibrations and watching the fibre optics relaxed him.
Over the last few months Kyle’s nursing needs increased as he became more prone to chest infections and was too ill to attend school. We are grateful for the constant stream of carers who were a great support to us and gave skilled professional care to Kyle. Many of these went beyond the call of duty and were willing to be contacted at any time of the day or night and to those we will be forever grateful.
Kyle was admitted to Horizon House on Tuesday 10 October for planned respite and passed away peacefully with his family present in the early hours of Friday.
The funeral took place on Sunday 15 October with approximately 500 attending, an indication of how much Kyle was loved by all who knew him.
We feel tremendously privileged to have been Kyle’s parents. Although his life has been so short it has impacted on the lives of so many others. His brothers and us have so many recollections and momentos gathered over the years which are deeply valued and will remain as treasured possessions and memories.
We recognise that we will encounter difficult days ahead as we attempt to come to terms with the huge void that Kyle’s passing has left in our lives. We are thankful that our trust is in the Lord who has sustained us throughout Kyle’s life and in our recent loss. We are assured of His faithfulness and know He will give us the strength to face each new day.
Kyle touched our hearts, changed our lives and will always be a part of us. Alison Shields
God said that you were getting tired
And a cure was not to be,
So he wrapped His arms around you
And whispered “Come with Me”
Your weakened heart stopped beating,
Pain free and now at rest
Although our hearts are breaking,
We know God only does what’s best.
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