Gauchers News Contents
Cliff Smith had Gauchers disease but died from a secondary condition on 30 December 2002. He was 55 years old and left his wife Angela and four children aged from 11 to 5. Cliff worked for the London Metropolitan Police for 33 years and then for the UN International Criminal Tribunal in the Hague. His eldest daughter Kate, her sister and brothers attend the British School in the Netherlands and asked the Headmaster if each pupil could dispense with their uniform for one day if they paid one Euro. Kate's letter is given below. Angela also asked friends and relatives not to send flowers to the funeral but give donations to the Gauchers Association. Over 2,500 was raised at the British School in the Netherlands and a total of £4,255 (6,220) has been raised in Cliff's memory.
In June 2000 my Dad was diagnosed with a very rare genetic disease called Gaucher disease. There is no cure but it is treatable and every week my Dad would infuse himself with a man-made enzyme. Normally this enzyme is in everyone but there is not enough in people with the disease.
Gaucher disease causes problems within the skeletal system and can cause oxygen to stop flowing through the bones. This happened to my Dad and part of his spine collapsed:he was in terrible pain. He went into hospital for 7 weeks, even over the Christmas holiday, and had an operation to put metal plates in his back to support it.
The disease also causes the spleen and liver to swell to up to 20 times their normal size. This then causes problems within the blood. My Dad used to bruise easily and had many blood transfusions.
The man-made enzyme helps the body to get back to normal although people have to have regular infusions. Most people are able to lead relatively normal lives but sometimes have severe bone pain.
During the summer of 2002 my Dad started to get other problems with chest pain and poor breathing. The doctors discovered that he now had a secondary disease called amyloidosis (a bone marrow disease similar to cancer). Less than 1% of people with Gaucher disease get this .
My Dad was very Brave
My Dad was very brave and started to have chemotherapy. It was planned that just after last Christmas he would have a stem cell transplant . He kept going to work for as long as he could and tried to do things with us at home but he went into hospital on 10 December. The doctors said he could come home on Christmas Eve. On Christmas Day he was very ill but helped us all with our presents even though he was in a lot of pain.
He had to return to hospital on Friday 27 December and was taken into the intensive care unit as his kidneys had stopped working. The next day he was moved to a private room and the doctors told him and my Mum that they could not do anything more to help him.
My sister, brothers and I spent a long time with him at the hospital and on Monday 30 December we went to the hospital and stayed with Daddy until the afternoon. He was hoping to come home but that evening at 6.40 he died.
My Dad was so brave and tried his best with everything. As Gaucher disease is so rare hardly anyone has heard of it, even some doctors .
The Gauchers Association
The Gauchers Association in England is a charity that helps children and adults with Gaucher disease. It also raises money for research but does not have much funding. It really relies on fund raising activities. If it had more money it would be able to do more to help people like my Dad.
I would really like the British School in the Netherlands to help people like my Dad. He was the best dad and no-one else should have to lose their daddy like we have.
Gauchers News Contents
Source: Gauchers News April 2003.
© Copyright Gauchers Association 2003.