THE family of a Frimley Green girl with severe epilepsy has launched an appeal for £120,000 to fund ground-breaking treatment in the USA.
Katherine Kendall has had a life dogged by illness. As a baby she had leukaemia, but gradually recovered after chemotherapy.
Her childhood development was delayed by this, and then suffered another blow when she was diagnosed with epilepsy at the age of five. Now 17, she has a developmental age of only four or five and instead of enjoying her teenage years, her life is governed by the constant seizure activity she suffers.
She spends weekdays at a residential home for epilepsy victims, and comes home every weekend and for holidays.
Her parents, Nigel and Anna Kendall, of Chartwell, Frimley Green, devote themselves completely to looking after her when she is at home. Nigel says there is always a risk of injury, because when a seizure strikes without warning, Katherine goes stiff as a board and goes down like a felled tree, forwards or backwards. On a good day there may be only one such seizure, but there can be as many as eight. With her type of epilepsy, there is a high risk of dying young due to injuries from falling.
She wears a protective helmet during the day, but one of the family has to "shadow" her every time she stands up or walks to another room. Aside from the overt seizures, Katherine's brain is subject to constant background seizures.
Nigel, a freelance journalist and photographer, works from home so he can be there to help look after Katherine. Her brother Oliver (22) is also a great help. "I don't know what we'd do without him," said Nigel.
He says the treatment offered by a surgeon in Omaha, Nebraska, has a 95 percent success rate. It consists of two operations, one on each side of the brain. UK surgeons will only operate on one side of the brain.
"It is expensive," he said, "but it is a one-off cost. This must be compared to the £1.3 million cost to the taxpayer to keep Katherine for the next 10 years." He said her drugs alone cost £140 a week and she needs one-on-one care all the time. When she has a bath or goes to the toilet, she needs two carers to help her.
"Basically I feel the surgery is a good investment," he said.
He believes that after the surgery Katherine will be able to come off the expensive drugs, live at home full time and begin to re-learn the skills she has forgotten.
He thinks she will then learn to take care of her own hygiene needs. "All those skills are still there. We just need to stop the seizure activity in her brain."
The Kendalls hope to start a national charity to enable surgeons in Britain to do the procedure and relieve other sufferers.
Nigel believes that there is more pioneering surgery in the US because the insurance companies do not want to support people for long periods, and therefore they back pioneering treatments. He says that the Nebraska treatment has a proven track record.
The surgeon has waived his fee, or the £120,000 cost would be even higher. So far the appeal has £12,000 in the kitty.
Anyone wanting to donate can send a cheque payable to The Katherine Appeal Trust at 10 Chartwell, Frimley Green, Surrey GU16 6HW. Readers who would like to help with fund-raising can contact the Kendalls on 01252 836880 (tel/fax) or by e-mail to firstname.lastname@example.org