Teen with rare fatal disorder could be given new lifeline

Suraen and Supema Senanayake

Suraen and Supema Senanayake

First published in Wimbledon by

A teenager diagnosed with a rare condition, predicted to take his life within ten years, is overjoyed a new research project could extend his life and protect his mother from breast cancer.

Wimbledon College pupil Suraen Senanayake, 15, from Chartfield Square, Putney, was diagnosed 12 years ago with Ataxia-Telangiectasia (A-T), a little-known genetic condition which causes severe disability in children and dramatically shortens their live. The current average life expectancy is 25.

His mother, Supema, a carrier of the gene, faces an increased risk of developing breast cancer - eight times more than most women.

Now a team at the Gurdon Institute in Cambridge is planning to use cutting edge technology, funded by the A-T Society and the Thomas Appeal, to test a new approach to treating A-T and hereditary breast cancer.

Mrs Senanayake said: ""When our son Suraen was diagnosed our lives came crashing down around us.

"Instead of watching him learn new skills and become more independent we faced the prospect of seeing Suraen become more and more disabled - and there was nothing we could do.

"Discovering I had a high risk of getting breast cancer only made things worse.

"The A-T Society have been a lifeline for us.

"Now, this project they are funding with the Thomas appeal means there is a light at the end of the tunnel and real hope for Suraen and other children like him."

The Gurdon Institute’s Professor Steve Jackson explained the condition means sufferers lack the ATM protein which ensure the well-being of cells and the DNA they contain.

He said: "We will be using a newly developed cell culture system and combining this with cutting-edge DNA sequencing methods to identify ways to correct cellular defects caused by mutations in the gene responsible for A-T.

"This will potentially open the door to therapeutic approaches for A-T, for hereditary breast cancer and for other inherited conditions."

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