Every weekend is a celebration in the Garforth household. Because ever since Lee and Hollie’s daughter Daisy was diagnosed with cerebral palsy they have been singing at wedding receptions to help pay for her care and equipment and to fund their travel costs to The Bobath Centre.
Complications during Daisy’s birth meant that she had to spend three weeks in the special baby care unit in hospital before being allowed home. As she grew, Lee and Hollie knew that she wasn’t developing as she should. A scan at seven months showed that brain damage had occurred.
“Being told she had cerebral palsy felt like being hit by a breeze block,” said Lee. After Daisy’s diagnosis of spastic quadriplegia (stiffness in all four limbs), Lee and Hollie felt helpless, unsure of what to do as they watched their daughter falling behind her cousins of the same age. “What made it doubly difficult was that the hospital couldn’t give us the information we needed,” says Lee. “Until then we’d had fantastic care, but now we were just left to get on with it.”
Daisy was a year old when her local physiotherapist suggested The Bobath Centre. Their first visit was in June 2012 and from then their lives began to improve. One of the first things their Bobath therapist Raj did, was to identify Daisy’s condition as dystonic athetosis. “This means that, rather than just being stiff in her limbs and trunk, Daisy’s muscle tone fluctuates so she can go from being floppy to stiff in a moment,” explains Raj. “This creates unpredictable spasms which restrict what she can do.”
It’s a rarer form of cerebral palsy and difficult for a less experienced therapist to treat, but one that Bobath therapists are familiar with. Lee and Hollie saw a new beginning for Daisy and began planning their next visit.
The family returned to the Centre in February 2013 when Daisy met Lynzi, her Bobath speech & language therapist. Lynzi worked alongside Raj to improve Daisy’s mouth control which was affecting what she could eat and how she reacted to food. Hollie recalls with delight the first time Daisy ate a biscuit. “We were sitting in a restaurant and the people around us thought we were mad because we were making such a fuss, but to us it was a major breakthrough! Thanks to Lynzi and Raj, Daisy can now chew better and enjoys a wider variety of food – “She now sits at the table and eats what we eat which she couldn’t do six months ago.”
Daisy can’t speak, but uses her smile and gestures to express herself; while she was at the centre she learned new ways of communicating. By the end of her visit, she had better control of her arms and hands so that she was able to press a switch, enabling her to articulate what she wants and how she feels. “Working with Daisy has given the family a foundation that they can build on so that she can participate in everyday situations and interact with people more easily,” says Raj.
The Garforths are convinced that Daisy must continue visiting the Bobath Centre if she is to reach her potential and so they sing at other people’s celebrations in their spare time to help cover some of the costs of treatment.
As Lee put it, “We can’t magic away Daisy’s disability but we can make her as independent as possible.”
Sadly, the NHS is funding fewer children with cerebral palsy to receive specialist treatment of the quality that the Bobath Centre can provide. Consequently, families are having to make difficult choices about their children’s independence, health and well-being each year.
This is why it’s vitally important that we help them to make the right choice by keeping treatment costs down.