This is the Home Page of ‘The James Stewardson Research and Welfare Trust for Children with TPI’. This Charity was formed in July 1994 by the family of James, who lives in Manchester,UK. By October 2000 the TPI Trust had provided almost £350,000 for the TPI research projects in London and Hungary.
Our Son James Stewardson with "Cat" - Born 29th May 1993, Passed away 12th November 1999
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.
Without a treatment or cure, the two English children,James Stewardson born 29th May 1993 and Jordan Stokes born March 25th 1994, along with five American, two Australian , one Spanish and one French child, will almost certainly not live beyond the age of 5 or 6 years.
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.
In the last 4 years TPI deficiency has also claimed the lives of:-
- Australian child Ebony Corscadden who passed away aged 18 months on November 15th 2000
- American twins Amanda and Nicole Fernandes, Amanda passed away aged 15 months on 2nd October 2000 and Nicole passed away aged 17 months on the 27th November 2000.
- American Baby Sarah Jane Gladhill who passed away aged just 5 months on October 27th 1998
- Jordan Stokes who passed away on January 17th 1997 aged 2 years and 10 months
James and Jordan were only the 28th and 29th TPI cases ever recorded worldwide in the 35 years since TPI Deficiency was first diagnosed.. Almost all the previous children died within the first 6 years of their lives.
This Home Page tells the story about one of the rarest medical conditions known to mankind and how the families of the only two UK children alive with this condition started a race against time to save their children's lives. Their only hope lies with the researchers in London and Budapest, who they hope can lead the way in the field of either gene therapy or enzyme replacement therapy.
The Hungarian aspect of the research is hoping to discover why one of the the two Hungarian TPI brothers is totally free of the fatal neuromuscular aspects of TPI Deficiency.
The research project started in earnest in December 1995 when 2 scientists were recruited by Kings College Hospital. To date the charity has raised almost £350,000 for TPI deficiency research. Of which, almost £275,000 so far has funded the Kings TPI research and £55,000 the Hungary TPI research!!
If you would like more information about the research project or the charity please E-mail Dave Stewardson by clicking here ====> Send E-Mail to Dave Stewardson (Father of James)
Discover more about Triose Phosphate Isomerase (TPI) deficiency, the families, the researchers and all the events surrounding the charity by selecting from the Index