A brave mum brushed her nerves to one side and completed an epic abseil for East Anglia’s Children’s Hospices (EACH).
Natalie Sharp, from Newmarket, took the leap of faith to show her support for the charity as it cares for her baby son.
Along with sister Sarah Wright and Sarah’s partner, Izi Mason, the trio raised £3,000 after descending 80 feet from the tower of the historic St Edmundsbury Cathedral, in Bury St Edmunds.
EACH provides care and support to Natalie’s family as son Theo, who turned one in March, has the condition WOREE Syndrome. The condition is extremely rare and includes global development delay and severe epilepsy. Theo was diagnosed last September, and he and his family are regular visitors to EACH’s hospice in Milton.
“EACH has made such an incredible difference, and the last year would have been so different without it in our lives,” said Natalie. “That’s why it was so important for us to raise funds and awareness by signing up for the abseil. It was brilliant, if slightly terrifying, and everyone made us so welcome.
“I did wonder what I was doing when I stood at the top and looked down at the ground, and I felt a lot of pressure as there was a crowd of people watching us. However, it was an amazing, exhilarating experience. I was shaking so much afterwards I couldn’t even open my water bottle, but I was buzzing.”
Natalie said she loved completing the challenge with Sarah and Izi, who travelled down from Liverpool. She also admitted being stunned by the amount they managed to raise.
“It exceeded all expectations and was absolutely incredible,” said the 34-year-old. “I was stunned by people’s generosity and even people and companies I don’t know and have never met sponsored us. It was very humbling and restores your faith in people’s kindness.”
There are only around 150 known cases in the world of children with WOREE Syndrome. It can be genetically inherited from both parents when they both have a mutation of the WWOX gene.
“Theo was diagnosed last September, when he was four months old,” said Natalie. We had an idea something wasn’t quite right, in terms of developmental delay, and then he had his first seizure. Soon afterwards we were told about EACH.
“To be honest, I didn’t know anything beforehand and felt reluctant and apprehensive when we received our first letter from Milton. The word ‘hospice’ scared me, and it was confirmation of the challenging journey we were facing. I also thought it was just about end-of-life care.
“However, EACH has made such a massive difference in the eight months since, and I don’t know where we’d be without it. Theo particularly loves music therapy and hydrotherapy. He’s had short breaks during the day and overnight, and it’s such a positive, welcoming environment.
“This year would have been so different without it. I’d have been at home, feeling isolated and not knowing which way to turn. Instead, EACH has helped enormously and that’s why I wanted to sign up for the abseil, as a way of showing my gratitude and giving something back.”
Natalie, who is married to Tom, says Theo is a bundle of joy who has a very close relationship with four-year-old sister Tilly.
“Tilly absolutely dotes on him,” she said. “Despite his challenges, Theo is the happiest, most hilarious little boy and getting on surprisingly well – defying expectations. Because so little is known about his condition, the medical team warned us he wouldn’t be able to move his limbs or show emotion. However, he’s doing both of those things, and his personality shines through. He’s able to eat pureed food, rather than using a tube, and we think he’s amazing.”
