Ellie Carter: an angel born 6 July 2003 with Type 2 Gaucher Disease

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Ellie died on 9 February 2004 aged seven months. Her parents, Jill and Ian, have raised over £10,000 in her name. This is their story:

Our daughter Eleanor Lily Carter was born on 6 July 2003, a beautiful little angel who was the double of her brother Cameron, writes their mother Jill. When we took her home our family life was fantastic. I remember thinking how happy I was and thankful that I had everything I could ever wish for - one of those feelings where you could hug yourself you are so happy.

When Ellie was 13 weeks old she started to choke on her feeds to the point of turning blue and passing out. After several emergency visits to the hospital and weeks of tests, on 19 November 2003 Cameron's fifth birthday our world fell apart. Ellie was diagnosed with Type 2 Gauchers disease.

What? We had never heard of this before. We entered a phase of denial. Her father Ian and I threw ourselves into trying to find someone in the world who could help us, surely in this day and age babies don't die from disease? But there was no one. We had to accept that our little one would be taken from us soon and no parent should ever have to feel like this. The mention of the word Gauchers made us feel sick. We wished that we had never heard of it .

The reality of our situation was hitting us big style. It's a daunting thought that you will never hug yourself with happiness again, because no matter whatever happens in your life in future, there will always be a little sadness surrounding it. A special person would be missing. But then we looked at Ellie, so happy and unaware of what was happening to her, we knew that this disease had to be stopped. Maybe, we reasoned, that's why Ellie was sent to us.

Perhaps, because of the strength we had to find in ourselves and our devotion as parents, we could use this to make a difference and stop other families' lives being destroyed so cruelly. We therefore decided that this should not be allowed to happen to others in future. Someone had to find a cure for this terrible disease.

In Ellie's name we set up ELF, the Eleanor Lily Foundation, to raise funds for this purpose. It began at Ellie's christening. On her invitations Ellie told the guests that she had everything in the world that she needed and asked that instead of buying a present, guests could make a donation to ELF. Ellie raised £2,500 at her christening to help other babies and we are so proud of her. Two weeks later Ellie lost her battle at 7 months of age on 9 February 2004 but we pray not in vain.

Ellie brought a lot of happiness and pleasure in her short life, not only to family and friends but also to those who had only seen a photograph of her, with her big blue eyes and her beautiful little face. Ellie's fund is going from strength to strength with fund raising initiatives such as regular car boot sales, cake sales and party evenings. In addition, various clubs and workplaces of myself and Ian have contributed greatly over the past few months. A special concert was held at our church where children from the local school held an evening of fantastic entertainment raising over £400.

We have produced a bookmark for the fund which is being sold for £1 and this has raised £500 so far. In July a huge sponsored jet ski ride in the North Sea from South Shields to Berwick was undertaken by our mad (but kind) neighbour, who also says that he wants to also swim Loch Ness in the winter for Ellie's fund. We have been overwhelmed with the kindness and support offered by not only family, friends and neighbours, but also complete strangers.

We have now raised over £10,000. Ellie has made a huge impact in her short life that we believe will one day make a difference. It has to and we need to make sure that this continues. Ellie gives us the strength to carry on and will always be remembered for the love she gave. We are constantly endeavouring to raise funds and awareness and will continue in the hope that it may help other babies .

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Source: Gauchers News October 2004.
© Copyright Gauchers Association 2004.