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Brave family lead fight for cancer cure

Annette Lord
28/ 6/2007

AN INSPIRATIONAL family is about to break new ground worldwide by helping to host a conference into a rare medical condition which could hold the key to curing cancer.

Colin and Cath Stone's 13-year-old daughter Helaina is one of just 300 people in the world with Costello Syndrome (CS) - a genetic problem with numerous development defects.

In 1995, the year after she was born, Helaina's parents created the International Costello Syndrome support group to find out more about the disorder - which can lead to heart problems, cancer and eyesight problems, as well as stunted growth.

Then just 30 people were known suffers. Now, as well as this increasing ten-fold, scientists are one step nearer to a cure.

Two years ago medics discovered the gene mutation which causes CS - a gene which is very well studied in cancer tumours by cancer doctors.

But children with CS experience this mutation in every cell of their body.

"This has the potential to blow open the fundamental understanding of human genetics. It's that groundbreaking," said Colin.

On 19 July the fifth international CS conference opens in Portland, Oregon, USA - featuring for the first time a medical symposium where world experts will gather.

"This conference is going to be the biggest and best ever," said Colin from the family home in Parkfield Drive North, New Moston. "The symposium is the most amazing opportunity. There's some really amazing people coming, including the guy in Japan who discovered the gene which causes CS and a doctor from Australia.

"It will be a who's who of medical experts."

Although the symposium is being organised by a medical advisory board set up at the second international conference in 2001, Colin and Cath still head the family support group and much of the fundraising. They have seen £25,000 to £30,000 raised for the group over the last 10 years and every penny raised goes to supporting families with CS. They don't charge any joining fees, or charge doctors any conference fees.

This time the support group is paying the hotel bill for seven families across the world to attend the conference, which bring families together who would otherwise never come into contact with another person with CS and learn from their experiences.

The Stones are looking for corporate sponsors and donors, and anyone else who could help, particularly with printing costs.

They have already started fundraising for the next conference in 2009, which they hope will bring together suffering not only of CS but also related syndromes Noonan and CFC.

Colin Stone can be contacted through the support group website at www.costellokids.org.uk