Real Life The picture that means so much
Caroline Toombes never fails to be amazed by the incredible work of her daughter
Looking at this picture of my daughter, Evie, then 16, addressing a room of children, I’m immensely proud. It’s just one of the many speeches she’s delivered about living with disabilities. And Evie knows better than most exactly what that feels like.
When Evie was seven months, a paediatrician grew concerned over a birthmark on her back.
‘This could be the sign of a tethered spinal cord,’ he said.
A few weeks later, doctors confirmed that Evie had a form of spina bifida, a condition where a baby’s spine doesn’t develop properly in the womb, and can cause bladder and bowel problems and issues with mobility.
In March 2003, at 16 months, Evie had spinal surgery in an attempt to detether her spinal cord. The operation was a success. Before long, she was able to crawl and she walked within three months of surgery.
As she got older, other symptoms of the condition began to manifest themselves. Evie was often weak, had pain in her legs leaving her unable to walk, and she had issues with her bladder and bowel that required a catheter.
Evie was socially isolated, too. Her disability sometimes left her subject to teasing. She was forced to take time off school as she struggled with pain, and trips and sleepovers were almost impossible as they were places where she couldn’t fully manage her condition.
In 2013, Evie decided to start raising awareness of invisible disabilities. She went back to her old primary school and delivered a speech about a puppy that was isolated because its legs and tummy hurt. The students were saddened to hear how lonely the puppy was and Evie explained that she was just the same, emphasising how important it was to help each other. Since then, Evie has made speech after speech, and has continued to preach her motto –‘find a way, not an excuse’ – in many schools.
In fact, Evie was so passionate about promoting understanding that she penned a children’s book, based on the puppy story, before establishing the Evie Toombes Foundation in 2018.
‘Why don’t you nominate Evie for a Wellchild Award?’ a friend said that same year. The charity celebrates the inspirational qualities of ill children and young people. And when I thought about all the amazing work Evie had done, I felt she’d be a worthy contender.
Evie made the shortlist. In September, we went to the ceremony in London. That night, Evie’s name was called as the recipient of the Inspirational Young Person 15-18 award. That she’d been recognised for the work she’d been doing was incredible, and she was honoured to meet the Duke and Duchess of Sussex to discuss her work.
Evie will continue to battle with complications caused by spina bifida for the rest of her life. She feeds through a tube in her nose and receives intravenous nutrition directly to her heart. But, in spite of it all, she continues to touch and better the lives of others, and that truly makes me one proud mum.