A Retford mum whose daughter has a severe form of epilepsy is taking on an epic, mud-soaked challenge for the charity that’s changed their lives. Katie Barrowcliffe, husband Mat and five-year-old daughter Ella have been supported by Bluebell Wood Children’s Hospice since 2018.
Now Katie, from Ranskill, will be wading through knee-deep mud and clambering over obstacles alongside hundreds of others when Bluebell Wood’s Mud Madness event returns to Sheffield in April.
“Amazing” Ella was diagnosed with a hole in her heart at the 20 week scan, so the family knew she’d have to go through open heart surgery as a new-born.“She seemed okay at first but after a few weeks we noticed she’d started making small jerky movements, and wasn’t meeting milestones,” said Katie, a 36-year-old occupational therapist.“We were in and out of Doncaster Royal Infirmary preparing for her heart surgery, and I remember showing a video of Ella to the cardiologist, who referred us to neurology straight away.”
Ella was diagnosed with West Syndrome, described by doctors as a ‘storm’ in her brain.
“Her brain is constantly firing with activity, so she isn’t able to process anything else. It’s had a massive effect on her development,” said Mat.
“Initially, we were both so worried about her surgery, but in the end it’s the epilepsy that’s affected her most.
“It’s just constant. I remember one time I was looking after Ella on my own, and she just lay there having seizures all day. It really affected me, since it was the first day I’d spent on my own with my daughter.”
Despite all the challenges she’s faced, Ella never fails to astonish mum and dad.
“When I think back, the kind of character Ella has now really is amazing. She does things we never thought she’d do, like roll over,” said Mat.
“For someone with a child who is okay, it would be such a tiny thing but for us it’s massive.”
Since 2018, the family have been visiting Bluebell Wood for support, respite care, music therapy and other events.
“People don’t realise the extent of the services Bluebell Wood provide — the support really is fantastic,” said Katie.
“It’s such a fun and caring place that’s there to support the whole family. Having someone in Bluebell Wood’s care team look after Ella for a few hours makes a huge difference, and means we can spend quality time together.
“It can still be hard to see what other children Ella’s age are doing, but when we visit we can talk to other families who are going through similar things, which really helps.
“That’s why I really want to give something back so that other families can continue to access this vital support, and Mud Madness seems like the perfect way to do it.”
Katie will be taking on Mud Madness alongside her mother-in-law and two sister-in-laws so it’s very much a family effort.
Mud Madness comes to Sheffield on Saturday 18th April. For more information and to book your place, go to www.bluebellwood.org/Event/mud-madness-2020.