A three-year-old from Maidstone is enjoying a whole new lease of life thanks to her specialist wheelchair provided by Kent Community Health NHS Foundation Trust.
Laylalilly Roberts, from Belts Wood, has a smile that could melt the polar ice caps. The energetic and happy tot, loves Peppa pig, reading books with her mum and dad, and her favourite pink dolly. She is also quite fond of her new baby sister, Ava Evelyn.
However, unlike most toddlers, Laylalilly uses a high-tech wheelchair every day and her parents have already faced challenges most families never have to think about.
Born with spina bifida, a condition that develops during pregnancy where the spine does not grow properly, Laylalilly is paralysed from her legs down. She developed excess fluid on the brain, called hydrocephalus, a common side effect of spina bifida, which can lead to developmental delay and she has bladder and bowel weakness.
Laylalilly’s mum, Sherena, 31 and dad, Russell, 40, knew she would need 24-hour care from day one when her birth was anything but straight forward.
Russell said: “Laylalilly was born with open lumbar spina bifida and had to have an operation when she was just one day old to close the hole in her spine. She had to be resuscitated at birth. Then at 10 days old they operated again to put a shunt in her brain to drain the excess fluid and ease the pressure caused by the hydrocephalus. To say she is a little fighter is an understatement!”
Months of hospital appointments followed, including at the Evelina Children’s Hospital in London and Maidstone hospital, where Laylalilly received specialist care.
Fast forward 18 months and Laylalilly proved she wasn’t going to let anything hold her back from being the fun, happy little girl she is.
Sherena said: “She can commando crawl like a little soldier and she attends two nurseries which she loves – one mainstream and one that supports children with special needs – but we still had to do so much for her to keep her safe. If we weren’t carrying her, she was always on the floor or sat in a chair and you could see how frustrated this made her. The Evelina saw she needed more help to be mobile and referred Laylalilly to the Kent Wheelchair Service for specialist equipment.”
Enter Jackie Manktelow, Team Leader for the KCHFT Wheelchair Service. After a thorough assessment with wheelchair partners GBL, Jackie knew they would need something very specialist to fit Laylalilly’s needs.
She said: “Because she is such a strong crawler it was clear Laylalilly needed a self-propelling wheelchair, but due to her size and age, we needed to provide something that had the small seat size she needed and was incredibly lightweight so she could comfortably propel herself.
“The wheelchair service is not normally commissioned to provide chairs to children under three, but because we wanted to support Laylalilly to develop independent mobility as early as possible and we knew the chair would grow with her, we were able to specially fund a Panthera Bambino.
“From the second we sat her in the chair she was off and self-propelling. It’s a fantastic piece of kit and really suits all her needs. She took to it like an absolute natural and it was wonderful to see.”
Russell agrees, he said: “Her chair has made her more independent and so much happier. She can interact with people, socialise and start to do things for herself. The best thing is the chair can grow with her so it will support her development too. It has made a big difference for all of us.”