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James Stewardson Research and Welfare Trust for Children with TPI Deficiency
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This Charity was formed in July 1994 by the family of James, who lived in Manchester UK. By October 2000 the TPI Trust had provided almost £350,000 for the TPI research projects in London and Hungary.
TPI is a deadly genetically inherited metabolic disorder, Triose Phosphate Isomerase (TPI) Deficiency, an enzyme deficiency, for which the families of the only 2 UK sufferers are funding a research project at Kings College Hospital in London and the National Institute of Haematology, Blood Transfusion & Immunology in Budapest, to find a treatment or cure.
After the initial shock and devastation of being told on April 27th 1994 that our son James had TPI, for which there was no known treatment or cure and that our 10 month old son had no hope of a future, we (James Stewardson's mother and father David and Yvonne) decided to fund a project anywhere in the world to find a treatment or cure for James. At this point we believed James was the only child still alive with TPI anywhere in the world. Tragically it is now too late for our son James Stewardson who passed away at home in our arms on November 12th 1999 aged 6 years and 5 months.
The registered charity 'The James Stewardson Research and Welfare Trust for Children with TPI', Reg charity No 1039664 was formed in July 1994 by James's Mum, Dad and Uncle Peter to raise funds to finance this project. At about this time, Jordan Stokes aged 4 months was also diagnosed with TPI and his Mum and Dad, Rachel and Brendan became trustees of the charity and at the same time started fund-raising. Devastatingly, Jordan Stokes passed away on January 17th 1997 aged 2 years and 10 months.
After various worldwide correspondence with scientists who had researched TPI, it was decided to finance the project, to find a treatment or cure at Kings College Hospital in London under Professor Alastair Bellingham, they were already working on TPI and drafted a proposal costing £214,000 for a 3 year project employing two Scientists full time. Their proposal was independently reviewed by a eminent colleague, provided by the Research Trust for Metabolic Diseases in Children (RTMDC), after which we accepted.This was later to rise to £229,000 to enable further research to take place in Budapest, Hungary, under Professor Susan Hollan. The £229,000 target was reached in March 1996.
This charity is run solely by the two UK families, its only aim is to find a treatment or cure for TPI.
To find out more about the Trust and how you can help, click on the link on the left-hand side.
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