Cowsills are on a charity mission

LITTLE battlers Cordelia and Oliver Cowsill with mum Amanda.

GREENFIELD siblings Cordelia and Oliver Cowsill are on a mission to raise awareness of a rare genetic condition.

The youngsters, who attend Kingfisher Special School in Chadderton, both suffer from Tuberous Sclerosis Complex.

TSC causes tumours to grow anywhere on the body and can lead to epilepsy, learning difficulties and disability.

Both Cordelia (eight) and Oliver (11) have been seriously affected with communications problems and learning delay since birth.

When Cordelia was just eighteen months old she had a major operation to remove the whole of the right side of her brain because of TSC tumours which were causing her to have up to 70 epileptic seizures a day.

To coincide with International Rare Disease Day yesterday, the brave pair are encouraging Oldhamers to raise money for a charity of their choice by hosting a dinner party for friends.

Anyone interested in joining in can visit www.dinner4good.com/tsa and send email invitations to their chosen dinner guests who can accept and donate online.

The site has an automated system so that everyone can see who is coming, how much the dinner has raised and even what’s on the menu.

Active fundraisers themselves, the Cowsill family are now keen to join The Tuberous Sclerosis Association in highlighting this year’s Rare Disease Day which champions the plight of people with rare and chronically debilitating conditions. The focus for 2010 is to improve links between patients and researchers.

Mum Amanda said: “Cordelia is our little princess. She’s a very sociable little girl who enjoys learning things and is always running around, tiring me out. She’s a real battler. Oliver’s difficulties are very different but just as severe. We worry for their future.

“Because of the support we’ve received from the Tuberous Sclerosis Association and the genuine hope for the future which their research is bringing, we want to encourage local people to support this incredibly worthwhile charity which really helps children like Oliver and Cordelia. “

The Tuberous Sclerosis Association is a small UK charity which punches above its weight to help people with TSC.

As well as providing invaluable support for people like the Cowsills, who have to cope with the daily challenges of living with TSC, the Association has funded ground-breaking research which resulted in medical advances such as the hope of a drug – currently in trials – which appears to shrink tumours.

Dr Chris Kingswood, head of research for the Association, said: “In a matter of just a few years, we have moved from a point of minimal understanding and little hope to the present exciting times when medical research across the globe is capitalising on the considerable advancements in our knowledge of TSC and how to treat it.”