Jordan Stokes Story

Born 25th March 1994 in Chesterfield, Derbyshire, United Kingdom - Died January 17th 1997.

Last Updated January 27th 1997

Jordan with the Duchess of York at Romenda Lodge, her Surrey home - Christmas 1994.

Jordan passed away peacfully at home in bed with his Mum and Dad, Rachel and Brendan just before midnight on Friday 17th January 1997. Jordan's condition had started to deteriorate on New Years Day and nothing more could be humanely done to prolong his short life. Jordan leaves behind so many people who's heart he has touched. His huge eyes and wonderful smile will stay forever with those people priviliged to have known Jordan.

March 1996 Update

By an incredible coincidence, shortly after the charity was formed another child was diagnosed with TPI in Chesterfield, Derbyshire, England. His name is Jordan Stokes and he was 4 months old, by another coincidence Stokes is the maiden name of James's Mum Yvonne! This brought the number of UK families up to four, two previous children had died in early infancy, one in the late seventies and one in the late eighties. Both these families were from within a 40 mile radius of where James lives and both were seen by Professor Bellingham. Jordan's Mum and Dad, Rachel and Brendan agreed to help with the fund-raising to finance the research project and became trustees of the charity.

After Jordan became very ill at the age of 4 months and needed a blood transfusion, he experiended good health until he was struck down by chicken pox at around about 18 months of age. This is typical of how TPI deficiency affects children, what should be a fairly mild illness, becomes a very serious life threatening condition. It took Jordan a long time to overcome chicken pox and during this time his weight dropped considerably. He then started back on the road to recovery and gaining weight, but there is no doubt that the neurological manifistations of TPI deficiency are now evident in Jordan.

Jordan has a older Sister called Anna and younger Brother called Liam, neither has TPI deficiency, although both are carriers.