This rare Life-Threatening condition is being treated by The Institute of Health, in Washington,USA. There are only 5 cases known worldwide. Monthly visits to the consultants in the USA, ensure he has the right treatment and medication for his immune deficiency.
Nicholas is a lovely, happy boy, with a wonderful sense of humour. He has set up his own Support Group on the Internet to help other child sufferers, and has made many friends by doing this.

Kennedy was born healthy, but started to have 'fits' at about 6 weeks of age. This caused severe brain damage, and she is extremely handicapped. This cheeky little girl is unable to sit or walk, because she is very floppy with low muscle tone. She can roll from her back to her tummy only. She is very short sighted and is only able to make a few varied sounds.

Treatment:- With help from a Special Clinic, which has to be privately funded, her parents are being taught a series of stimulation exercises to help improve her quality of life. This will help her to strengthen her muscles, and to help her with her communication problems. The programme also helps with educational activities. Assessments take place on a regular basis.

Update for Kennedy:- Now aged 7 years, she has progressed incredibly well. She can now focus her eyes on people, can sit up, is learning to talk, and is still a cheeky little girl with an infectious giggle. She has grown so well now, and we will continue funding her treatment and therapy.

Samual is a delightful child, and has a twin sister, who is perfectly healthy and normal. He loves the attention people give him, especially as he has spent so much of his life in hospitals. He has had operations to strengthen his week stomach muscles, but he also has severe brain damage, causing many other problems.

Treatment:- We are funding is a Pioneering treatment and therapy found by Russian doctors which will help Sam to have a much better quality of life. Special Amino Acids help to restore the brain’s ability to transmit and receive signals, which in turn helps to improve the functioning of all body parts. Also, extensive physiotherapy stimulates the underlying muscle tissue. He also has Hyperbaric Oxygen Treatment to help repair damaged brain cells. With this treatment, children have been able to walk, use muscles unused before, talk and laugh, sit up, eat unaided and so on. The treatment costs £10,000 a year.

A Life threatening Brain Tumour had been removed successfully in the USA, but after a few years, another tumour developed. Because of its' position, doctors in the United Kingdom decided it was too dangerous to operate. Her parents were told that Angela would die, and to make her comfortable, and to enjoy the final part of her life.

Treatment:- A Pioneering Consultant in New York had designed refined equipment for removing such difficult tumours. Having seen the X-Rays and Brain Scans, he agreed the operation could be successful, if removed quickly. The Consultant had removed 15 difficult tumours, and this little girl deserved the chance of a longer LIFE. The operation was successful, but she had difficulty in the use of a hand.

James is a lovely, happy child who had no body movements and can not talk. He could not support his own body weight at all, which, as he gets older, and heavier, makes it hard on his parents.

Treatment:- We are funding Intensive Advance treatment and therapy, which will give him use of his limbs and he will have controlled body movements. He will also be able to talk, which will help the communication problem. Eventually, he will be able to stand on his legs, and even walk. The treatment costs £15,000 a year and he needs two years of treatment.

Commonly known as 'The Elephant Mans' Disease, the condition is genetic, progressive and prone to Cancer. Joanne is a pretty blonde girl, but very pale and thin. One side of her face has become elongated. She is prone to lung infections, and tires very easily. She was born with a broken leg, because her bones are extremely thin. She has large brown marks all over her body. As she gets older, she will become more disfigured. Joanne wants to be treated like every other child.

Treatment:- Painful Chemotherapy has been administered twice to date. New experimental drugs are being used to help a tumour behind her eye. Specialist surgery may be needed, and equipment and transport is needed for her. Treatment is dependant on how the disease takes its' form. We keep a close eye on her development.

He was severely disabled, physically and mentally. He is wheelchair bound all day, and could not communicate at all. In fact, he could not do anything for himself, and was looked after by ageing grand parents, making life hard for them.

Treatment:- Two years ago, Paul started to have a new treatment, Hyperbaric Oxygen Treatment, in this country, 5 times a week. His programme has been of great benefit to him. He is happier, can now talk, and has a good sense of humour. He is learning Mathematics, English and Computer Skills. He is also learning to speak the Greek language, because he would like to speak to his Grand Father in his own tongue.
Imagine how we felt, when we heard he had stood on his feet for the first time in his LIFE. We hope one day, that he will be able to walk.

Suffering from this very rare disease, with only 2 cases in the United Kingdom, and 40 world-wide, this crippling disease is known to be genetic. It is only found in females. Bones are deformed, brittle and grow slowly. Ribs are 'ribbon-thin'. Eyes, ears, fingers and toes are misplaced. Kidney infections and Pneumonia are a serious problem. She can not talk and never smiles.

Treatment:- Amy's mother states that Consultants are considering how to extend her rib-cage, by lengthening and widening it, because her lungs can not expand due to lack of space. Her legs are so crooked, that replacement bones may be inserted with metal discs, which hopefully will help her to stand and walk. Doctors in France and Ohio, USA are researching the disease and Amy's parents wish to go to Ohio with Amy to help the specialists with their research, and to determine future treatments.

Craig has suffered from various forms of Cancer most of his life. Surgery and treatment have been successful to date. He now has another Cancer which is not responding to treatment.

Treatment:- Consultant Doctors in Chicago and Seattle, USA, will see Craig in the USA, to help with a cure of his present Cancer, but also they want Craig can help them in their research and hopefully cure, of some rarer forms of the disease. Craig wants to be part of the research, because he feels he has already had an extension on his own life, and would like to help other people. Naturally, we hope this is successful for many sufferers in the future.

Only 200 cases of this complaint are known - world-wide. This beautiful child was born healthy. At 5 weeks of age, she suffered a severe 'fit' causing extreme brain damage and physical disabilities, affecting all of her bodily functions.

Treatment:- 'Brainwave Treatment' in Somerset helped her to communicate, and the joy was to see her smile. Justine had this treatment for approximately 18 months, but one day, she had a severe fit, and sadly died. Her mother believes that Justine died, so that more children with Life Threatening Diseases could be helped by us, giving a better Quality of LIFE. Our wonderful memories of Justine, live on in all the work we do to help other Sick and Disabled Children. You can read about adults and children that have sadly passed away on our Memorial page.

Bethany was born on 30 June 1999 13 weeks premature and weighing only 2lb 7oz and spent a total of 2 months in special care. As if this ordeal wasn’t enough, she also suffered brain damage and has subsequently been diagnosed with Cerebral Palsy. She has grown into a beautiful and cheerful little girl but she cannot sit unaided, feed herself or do many other things a child of her age would normally be able to do. However there is hope - she is very bright and determined and with revolutionary therapy from the Peto Institute in Hungary she has the potential to do so much more, maybe even walk.

Funds already raised have recently enabled Bethany to complete an initial 3 month course of therapy at the Institute where she made good progress towards acquiring the skills necessary to improve her quality of life. However, this therapy must be maintained in order to retain and build upon these improvements. We therefore need to raise more money to enable her to return to the Institute twice a year for a month at a time over the next few years, at a cost of around £2000 per month.

Hannah aquired a brain injury, which has left her with profound speech and physical difficulties.

Treatment:- Hannah will undergo Advanced Neuromotor Rehabilitation at the Advance Treatment Centre in East Grinstead.

Rachel cannot walk unaided. She uses a walking frame and wheelchair, but mostly crawls around.

Treatment:- Rachel will need 5 sessions a year at the Advance Treatment Centre in East Grinstead.

Bryony needs to undergo a treatment called Hyper-baric Oxygen Therapy. This treatment will straighten out her posture, loosen the tension in her limbs and muscles.

Treatment:- Francesca requires treatment to rebuild her muscle infrastructure, the hope is that she will some day be able to walk.