Charity helps to fund three-year-old’s powered chair
The parents of a three-year-old girl from Hindhead, near Guildford, in Surrey, has thanked a national charity for providing the funding needed to buy a state-of-the-art powered wheelchair for their three-year-old daughter.
Lily Palmer, has spinal muscular atrophy, a degenerative condition that makes the muscles weaker and restricts mobility.
Lily is a permanent wheelchair user but her manual wheelchair, and the powered wheelchair that she currently uses, are no longer suitable for her as they are unsafe on uneven surfaces. The battery on the powered wheelchair also runs out quickly.
“Lily starts primary school in September and she desperately needed a reliable and safe powered wheelchair to help with the transition from nursery,” explained her mother, Tamara. “She’s currently at Brook Nursery School, near Godalming, but she’s looking forward to starting at Hollycombe Primary School, in Milland, where she will need to be able to access a new environment.”
Tamara, aged 36, together with her 37-year-old husband, Nick, researched what powered wheelchair would meet Lily’s needs but discovered that there was a significant financial barrier to securing a new wheelchair that would be suitable for their daughter.
“The suppliers showed us a powered wheelchair that has the potential to grow with Lily as the base is identical to that of the young adult and adult wheelchairs,” said Tamara, who is a freelance translator. “As Lily grows we would only have to replace the chair so the wheelchair could last her into adulthood as we would start with the tiniest chair and then simply scale it up.
“However, the wheelchair cost £24,668, which was way beyond our budget.”
Tamara and Nick knew that they had to find the money for the wheelchair from somewhere but they didn’t know where to start.
They approached a local wheelchair voucher service only to be told that the scheme had closed because they were changing providers, whilst a number of other charities said that they were no longer giving grants due to the current coronavirus pandemic.
“I got into bed and just cried for two days,” exclaimed Tamara. “My daughter has a progressive condition and it moves on even if the rest of the world stops.”
Luckily the wheelchair supplier told Tamara and Nick, a self-employed builder, about Caudwell Children, the national charity that provides practical and emotional support to disabled children and their families.
“They told us about the funding they provide for specialist equipment so we applied online and we simply couldn’t believe it when we received a letter saying that they would fund 80 percent of the wheelchair,” said Nick. “To be offered nearly £20,000 from Caudwell Children whilst the country is in lock-down is very special, we simply can’t thank them enough.”
But Tamara and Nick still had to find the balance for the wheelchair so they set up a gofundme page and applied to several other charities for support.
“The response has been amazing,” Nick continued. “My sister Emma-Leoni Palmer, is a respected artist with nearly 5000 followers on Facebook. She shared Lily’s story on her page and the donations began to flood in.”
Not only that three local charities, the Melanie Braysher Trust, based in Haslemere, Over The Moon, in Chiddingfold, and Peter Allis Masters, located in the family’s village of Hindhead, contributed £5,000 between them.
Tamara says that the new wheelchair will have an enormous impact her daughter. As she explained: “Lily is a little performer and she loves singing and acting and going on stage with her friends at the Surrey Theatre Academy.
“She’s one of the stars of her class and her teacher, Lucy Moir, who also helped to fundraise loves her very brave approach to going on stage.
“Lily also loves science so when she goes to her new school the wheelchair will allow her to access all the classrooms and the facilities that they have there.”
Tamara says it’s the simple things that will make the biggest difference to Lily’s life. “The new wheelchair will allow her to wash her own hands, access cupboards and draws, and open doors for herself,” she enthused. “She’ll also be able to see into shop windows; these small acts have a huge significance as they will improve Lily’s independence and build her confidence.”
The new wheelchair will also benefit Tamara and Nick. “What can be incredibly difficult is helping Lily to wash her hands in the sink as she can’t reach,” explained Nick. “Her current wheelchair can’t be raised high enough so we have to take her out and hold her with one arm and try to support her on one leg, whilst somehow supporting her head to stop it from falling forward.
“It’s extremely difficult directing her hands to the water and helping her to rub them, one at a time.
“Her new wheelchair will allow her to reach into the sink herself, which will be great for her and us, we can’t wait for it to arrive in the next few weeks.”
Mark Bushell, from Caudwell Children, is delighted that the charity could support Lily. He said: “This is a real community effort with four charities, family, friends and members of the public coming together to ensure that Lily gets the equipment that she needs and deserves.
“It’s no surprise that as the daughter of a linguist Lily is studying French and even her teacher, Cecile Greener, helped to fundraise along with Surrey Police dispatcher Lindsay Judge, who helped spread the word through West Surrey Slings, a not-for-profit baby carrying consultancy. Lindsay even held a birthday fundraiser to add to the pot.”
Nick says the success of the fundraising will allow the family to insure and fund maintenance for the wheelchair and also provide Lily with even more support. As he explained: “Once the pandemic is over we hope to buy a puppy that we can train to act as a service dog for Lily, to help her out with different tasks, and we’re going to buy a new portable seating option for the chair.”
Mark says the new powered wheelchair will improve Lily’s quality of life immeasurably as it will make many more things accessible to her. As he concluded: “She will also be at the same eye level as her peers and she’ll be able to do so many more things for herself.
“Unfortunately, these highly specialised pieces of equipment come at a price, so it’s extremely heartening to see how, even in these unprecedented times, the people and charities involved have given so generously.
“With the continued support of local communities we can help even more children like Lily.”
To find out more about Caudwell Children and to make a donation to the charity visit the website here.