Lily Palmer has spinal muscular atrophy, a degenerative condition that makes the muscles weaker and restricts mobility.
She is a permanent wheelchair user but her manual chair, and the powered one 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 mum Tamara.
“She’s currently at Brook Nursery School, 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, 36, together with her 37-year-old husband Nick, researched what powered wheelchair would meet Lily’s needs but discovered 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 they had to find the money for the wheelchair from somewhere but didn’t know where to start.
They approached a local wheelchair voucher service only to be told the scheme had closed because they were changing providers, while a number of other charities said they were no longer giving grants because of the current coronavirus pandemic.
“I got into bed and just cried for two days,” said 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 they would fund 80 per cent of the wheelchair,” said Nick. “To be offered nearly £20,000 from Caudwell Children while the country is in lockdown 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 said.
“My sister Emma-Leoni Palmer is a respected artist with nearly 5,000 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 Alliss Masters, located in the family’s village of Hindhead – contributed £5,000 between them.
Tamara added the new wheelchair will have an enormous impact on her daughter.
“Lily is a little performer and she loves singing and acting and going on stage with her friends at the Surrey Theatre Academy.
“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 they have there.”
Tamara said 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 drawers, and open doors for herself,” she said.
“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 success of their fundraising will also allow the family to insure and fund maintenance for the wheelchair and also provide Lily with even more support.
Mark Bushell, from Caudwell Children, said: “This is a real community effort with four charities, family, friends and members of the public coming together to ensure Lillian gets the equipment 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 had a birthday fundraiser to add to the pot.
“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 Lillian.”