James Stewardson Research and Welfare Trust for Children with TPI
Web: www.tpitrust.com
The charity was formed in 1994 shortly after the founders' one year old son James was diagnosed with the rare, progressive and terminal condition - triose phosphate isomerase deficiency. Triose phosphate isomerase deficiency is an inborn metabolic disorder that is inherited causing an enzyme deficiency. The TPI enzyme is present in all cells.
Since James was diagnosed the Trust has discovered other families with TPI children. Some of these families also thought they were alone until they found the home page on the internet. There is a small number of families involved with the group, several of whom are in regular email contact. Each family can add their updates about their child to the home page. Any relevant information required is on the home page of the website.
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