07 March 2009

Mobility matters - The Northern Echo

The recent death of Ivan Cameron from cerebral palsy has raised the profile of this devastating condition.

Health Editor Barry Nelson visits a charity providing vital support for North-East children.

IN a mobile classroom on the edge of a County Durham town something remarkable is happening.

Kneeling on a floor pad and with arms outstretched, a teacher trained at the world-famous Peto Institute, in Budapest, is working with a severely disabled child. By gently guiding the child’s movements, encouraging him to stretch, reach out and grasp toys, the Hungarian “conductor” is able to gradually increase his mobility and flexibility.

Throughout the hour-long session, the conductor also talks and sings to the child, who responds with gurgles and cries of pleasure. But it is not all fun. From time to time the child grimaces as he struggles to complete a movement that an able-bodied youngster would find child’s play.

But for a youngster with cerebral palsy, just grasping a toy rattle and lifting it into the air takes a huge, unimaginable effort.

Every day children from all over the North-East are brought by their parents to the Heel & Toe charity on the outskirts of Spennymoor, so conductive education therapist Zsuzsanna Luteran can work her magic. Remarkably, the charity offers such therapy free of charge to families in the North-East who need it. With access to NHS physiotherapists strictly rationed, this has proved to be a lifeline for desperate families. In every case the 34 children who have regular conductive education sessions at Heel & Toe have benefited and made steady progress.
Now the charity is urgently appealing to the public to help them expand their services.

Zsuzsanna is an exponent of conductive education, a now internationally famous method of improving motor skills of children with cerebral palsy, spina bifida and other motor disorders. Developed at the Peto Institute more than 40 years ago, conductive education is now widely used by therapists across the world.
The institute’s website explains that conductive education is not a cure but “a method of exercises and education… performed intensively, five hours per day, five days per week, in small groups”.

ZSUZSANNA is delighted that families who use Heel & Toe keep coming back for more. “I am very happy that all of the parents of the children I teach have kept on coming back since October,” she says.

In every child she works with, Zsuzsanna says there has been progress. “I have seen positive changes in all of them, especially the younger ones,” she says.
Zsuzsanna says one of her clients, a ten-month-old baby, was like “a big piece of stone” when he was first brought to the centre. “At first he was unable to move, but now he can roll, creep and even sit up. His mum said she never expected him to do that.”

Each lesson is a mixture of group exercises and intensive, one-to-one sessions. “People sometimes think conductors are just physiotherapists, but it is much more,” says Zsuzsanna. “It covers every aspect of the person. It is everything – moving, speaking, eating, building up confidence – and they have to do this at home as well.”

A regular at Heel & Toe is twoyear- old Max, whose mother Leeann Harker comes from Crook. The very fact Max is alive is something of a miracle. “I was supposed to have twins in March,” says Leeann, “but they came very prematurely in November.
Michael died after four days and Max suffered from a massive bleed.”
After 100 days in hospital and a series of operations, she was able to bring Max home. Diagnosed with a severe form of cerebral palsy, experts warned her that he would probably be in a vegetative state. But while Max finds it impossible to perform most of the tasks a “normal” two-year-old could do, Leeann says he is making progress and can still communicate.

“He knows what he wants and he knows how to tell me. If he is hungry he sticks his tongue out. He can be very cheeky,” she says.

The conductive education sessions have been “absolutely fantastic”, according to Leeann. “He used to make little fists and hold them tight. He can now open his hands more easily.

He also tries to creep now and he can almost sit up on his own. We would be lost without this place. I just hope they raise all the money they need.”
Centre manager Doug Long says the charity is “quite unique” in the North-East in offering free conductive education. However, Heel & Toe is now “at saturation level” and needs to appoint a second conductor.

Recently the charity was awarded £9,027 of National Lottery funds to spend on specialist equipment.

That’s a big help, but the charity needs to expand.
“We need to raise £86,000 a year at the moment, but we have big plans for the future. By the end of 2012 we plan to spend £250,000,” says Doug.
The recent tragic death of Conservative leader David Cameron’s six-year-old son Ivan – who had a severe form of cerebral palsy – has raised the profile of the condition among the general public. But Doug says the charity needs to do more.
Later this month Heel & Toe is holding its first spring charity ball at The Swallow Three Tuns Hotel, in Durham City. A black tie charity night, subtitled Black Ties, Big Hearts, the event will include a fourcourse meal, guest speaker The Northern Echo columnist, Mike Amos, live music from a North-East band, followed by a disco.

Tickets – at £40 per person – are available by table or individually.
“Raising money has got more difficult for charities recently and we really need people to get behind us,”
says Doug. “Hopefully our black tie dinner will become an annual event.
We certainly could do with the money,” he laughs.

■ The charity event is on Saturday, March 21. For tickets ring 0844-335-0512 or 01388- 890775 or email info@heeland toe.org.uk

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