LANDLADY Yvonne Cleminson made sure the fruits of her fundraising got into the right hands when MP Virginia Bottomley presented a cheque for £22,000 to Professor Mike Pope at The Cherry Tree Pub, ROWLEDGE.

Professor Pope is the UK's leading researcher into Ehlers Danlos Syndrome, the potentially life threatening disease from which Yvonne's daughter, Emma, died and which Jay, her grandson, now has.

Yvonne has been remarkably successful in her fundraising activities for research into Ehlers Danlos Syndrome.

These include football matches between The Cherry Tree and Tottenham Hotspur Legends, a sale at Frensham Heights School and the head shaving of local fish and chip shop owner Dave Collins.

The Cherry Tree owners, Greene King plc, also gave a generous donation to help boost funds.

Elwyn Walker, sales development manager for Greene King, commented: "We were only too happy to help support Yvonne in her fundraising. She's a brilliant and committed landlady who's been through a great deal."

"Everyone has been so keen to lend a hand and that's the reason why we've been able to raise such a large amount to help towards the research of this relatively unknown killer," said Yvonne.

"My grandson has the illness which killed my daughter Emma two years ago, so it's really important that funds are available quickly."

Ehlers Danlos Syndrome is a genetic disease that involves the malformation of collagen, causing a deficiency in the connective tissue. It affects arteries, organs, skin and bones, which then become thin and weak and rupture or break easily.

There are six major types of EDS but the vascular type - from which Emma suffered and which Jay now has - is the most serious. This type, which causes the stretching of artery and vein walls, can lead to fatal ruptures of internal vessels and organs.

EDS is usually transmitted genetically, but can occur spontaneously during conception. Professor Pope, of Cardiff University, who pioneered techiniques for collagen testing, is the leading authority in general connective tissue disorders.

He is the only clinician who can offer a full clinical assessment of EDS, backed up by diagnostic testing.

At present one in 5,000 people are affected by EDS worldwide. There is no known cure and sufferers are reliant on the management of symptoms.

A Farnham man, Ashley Green, has set up the EDS Society to offer support and advice to sufferers. It now has around 800 families as members.

The emphasis is on helping patients to look after themselves, and educating parents of children with the disease, so that appropriate cautionary measures can be taken and children made aware of the limitations the condition imposes.

The EDS Society also educates doctors and other health care professionals about how to help patients take care of joints and make them aware of dangers when undergoing any form or medical treatment.

For instance, when patients are anaethestised, care has to be taken that tubes do not cause dislocation of the jaw or scratch the lining of the throat or windpipe.

Surgical patients also need special care regarding closure and healing of wounds following incision.

Since her daughter's death, Yvonne has been trying to raise awareness of the disease and money to help further Professor Pope's research into EDS.

Part of the reason for last week's presentation at the Cherry Tree was to facilitate a meeting between Virginia Bottomley and Professor Pope and to enable them both to meet Jay.

Jay is now four and, given that he has EDS, is living as normal life as possible, though he is unable to take part in contact sports and will need to be watched more as he gets older.

"I just wanted Professor Pope to be aware that this little boy is the one that I'm fighting for, so that whenever he hears 'Jay Lloyd' he'll be able to put a face to the name," said Yvonne.

"I also wanted people in this area to know that the money we collected is going to this man to help him find out more about EDS."

Yvonne said a lot of people have EDS without realising it. The main symptoms are bruising, poor healing of wounds and hypermobility of joints. The skin of sufferers tends to be pale and thin, due to its lack of elasticity, and care has to be take against blood clots.

In addition to being based at Cardiff University, Professor Pope also has an NHS clinic at Great Ormond Street and does advisory consulations for GPs and other specialists. He plans a move to King's College Hospital, London.

Virginia Bottomley said: "Congratulations are due to Yvonne Cleminson and all at The Cherry Tree.

"I was greatly encouraged by Professor Pope's plans to move to King's College Hospital. This offers the best opportunity yet for his work.

"As the local MP, I will continue to press the government to do all they can to search for better diagnosis, treatment and cure of EDS."

For more information on Ehlers-Danlos Syndrome contact Ashley Green, tel 01252 690940.