Links between the UK and Australian Families

Because TPI deficiency is so rare, only about 28 cases reported world-wide to date, one of the first questions Professor Bellingham asked the parents of James and Jordan was, are you related? In the case of James's parents the answer was no, not knowingly, but Jordans parents knew they were distant cousins.Devastatingly, Jordan Stokes passed away on January 17th 1997 aged 2 years and 10 months.

When James's parents were told about Jordan being diagnosed with TPI deficiency and that his surname was Stokes, same as James's Mum Yvonne, it was assumed there was a very strong possibility they were related. At the same time contact was made with the parents of Kieran Latham, Bev and Grant in Australia, Kieran had died of TPI deficiency in July 1990. Bev and Grant were known to be 2nd cousins. The Latham's originated from Leigh in Greater Manchester and had emigrated to New Zealand in the 1920's, Latham was also James's Dad David's mother maiden name. So it was assumed that David Stewardson was related to the Latham's of Australia and Yvonne Stokes was related to Jordan Stokes's father Brendan.

The Brother of Kieran Latham's father, Kieran's Uncle Wayne, was working in London when contact with Bev and Grant Latham was made in July 1994. The Stewardson's became good friends of Wayne, and Wayne readily gave blood to Professor Bellingham's team for analysis.

Recently the immediate Stewardson and Stokes families have been tested to confirm that TPI was from the Latham and Stokes leg of the respective families, incredibly the tests proved that the faulty TPI gene originated from David's Father and Yvonnes Mother, the Stewardson and Forker legs respectively! This surprised everybody!

The other Australian child, Daniel Johnston was diagnosed at around about the same time as Kieran Latham, it was Kieran's parents who had informed the Stewardson's about Daniel. It was not until the summer of 1995 that the Stewardson's made contact with Daniel's parents. Daniel is now 6 years old and in reasonably good health, he was able to walk unaided until recently and attends mainstream primary school. By an amazing coincidence the Mother of Daniel's Mum was in England visiting relatives and she agreed to give blood for analysis. Some months later Professor Bellingham was in Australia and met Daniel, he took the opportunity to come back with a blood sample from Daniel. The Johnton family also originate from the UK.

This gave Dr Roopen Arya blood samples from 5 UK TPI families (2 deceased) and 2 Australian families, and he has been able to confirm through DNA testing that all these families have one common ancestor. Roopen has found a 'founder affect' within the TPI gene that is unique only, to all the UK and Australian TPI families.

Ashley Smith from Louisiana USA, is apparently from French origin and there are some known French TPI families. A French family with a 4 years old son, Edwin Bouchard has recently become known to us. It is hoped that blood samples of the 2 American children Ashley and Marissa along with the French child, Edwin, can be sent to London in the near future.

In the meantime Kings College Hospital are to commission a family tree search for the UK families. News of this will be provided as soon as possible.

Recently the USA Smith family passed their family tree, going back almost 400 years to the Stewardson's, this has been copied to Professor Bellinghams team in London.

If you know of any TPI deficiency patients, past or present, please E-mail me at:
Send E-Mail to Dave Stewardson (Father of James)