Among those taking part in this year’s Walkathon for ellenor – a marathon 26 mile walk from Tower Bridge to ellenor Gravesend – is Louise Jenner from Snodland, mother of one of the hospice charity’s young patients, Sophie. Apart from wishing to raise vital funds for ellenor, the charity’s Walkathon this year is on Sunday 2 July – which happens to be Sophie’s 11th birthday - so it gives Louise a very special reason to take part in the challenge.
When Sophie was born, her parents knew straightaway that something wasn’t right.
“Her tiny body was floppy; she didn’t cry and barely woke for food,” remembers Louise.
Then Sophie began having seizures and had to be put on a ventilator in intensive care. Then, at just ten days old, her parents – Louise and Dad, Danny - were given the devastating news that their baby girl had non-ketotic hyperglycinemia, a rare and incurable metabolic condition that meant it was unlikely she’d reach adulthood.
“When we found out how serious her condition was, we were in shock,” says Louise. “There was nothing that we could do to make her better. Our only heartbreaking option was to turn off the ventilator. But our little fighter defied the odds.”
Sophie can’t communicate and has several seizures every day.
“As parents, we just have to try and keep her as comfortable and hopefully seizure-free as possible,” says Louise. “With the help of ellenor this is possible. Our ellenor nurse is always at the end of the phone if I need her and has been brilliant in helping us to arrange specialist appointments and transport when needed.”
Louise says that when Sophie is unwell, she calls ellenor – which often prevents a visit to hospital.
“ellenor nurses give me the reassurance and confidence that I am giving Sophie the best possible care,” says Louise.
ellenor’s Walkathon sees participants walking from the centre of London back to Gravesend, with a number of marshalled points in between.Among those who took part in the 2016 event was ellenor’s Physiotherapist, Jenny Sherburn.
“The atmosphere was lovely, with lots of support from the amazing volunteers at the check points and lots of horn honking and waves from passing cars,” says Jenny. “It was a great day with an amazing sense of achievement knowing we'd walked ourselves that far!”
Louise is doing the walk with her good friend, Stephanie Fincham, and they are hoping that Sophie can join them in her wheelchair for the last mile or so.
“I wanted to do something to support ellenor – the amazing charity that has given our family so much - and, as the Walkathon is taking place on Sophie’s birthday, it seemed the perfect thing to do,” says Louise. “Every year, we try to have a big celebration of her birthday, as it's another year that we have been fortunate enough to have her here with us. We believe ellenor has helped us to keep her as healthy as possible to give us that opportunity.”
If you’d like to join Louise on this year’s Walkathon for ellenor, visit: https://ellenor.org/Events/event-details/walkathon0