As Acorns Children’s Hospice counts down to the Birmingham Bubble Rush this weekend, the charity is appealing for participants to raise as much money as possible towards its work caring for children and families. Here’s why…
When loving mum Emma Exton-Cook noticed her daughter Stephanie wasn’t reaching the developmental milestones of a typical six month old, alarm bells started ringing.
The family’s health visitor referred Stephanie to a paediatrician at Good Hope Hospital. There Emma and husband Steven were told their baby girl had Lennox-Gastaut syndrome, a severe form of epilepsy, and chromosome disorder IDIC 15.
Emma explained: “It was frightening. Everything just changed. We suspected something wasn’t quite right, but then all of a sudden we had a diagnosis thrown at us and were being told she might not live to adulthood.”
The conditions mean Stephanie is unable to walk or talk, has acute learning difficulties and requires 24-hour care. She also has seizures, which primarily happen as she sleeps and can range from 20 to 100 a night. As a result, she tires easily and can often sleep for days at a time.
Like many mums Emma was anxious about taking her child to a children’s hospice but at Acorns her worries were quickly eased.
Emma said: “The word hospice is scary. You think of it as end of life care, you don’t think about respite. So, at first, I was frightened to go and see it. But we loved it!”
More comfort came when Emma and Steven were able to join Stephanie for her first overnight stay at Acorns hospice in Birmingham.
“We stayed in the family flat, which was lovely – it felt like a little holiday. Steph was downstairs, so we could check on her whenever we wanted to. It was great because I couldn’t sleep so was constantly up and downstairs. But she was fine. For the first time we were able to just sit and watch a film as a family while Steph was being cared for, which is just what we needed,” explained Emma, who is also mum to Chloe (11) and Grant (22).
Respite stays are just one of the services 17-year-old Stephanie and her family use at Acorns.
Emma said: “We’ve been to swimming sessions with Stephanie, which Chloe absolutely loves. It’s chance for her to spend quality time Stephanie and have fun. We wouldn’t be able to go to a mainstream swimming pool because the hygiene, temperature and changing facilities aren’t right. But we can come to Acorns and it’s stress free.
“Acorns gives Stephanie time away from the family as well and time to have fun and a rest from herself – when she goes to Acorns, she has fewer seizures.
“For me, Acorns gives me the chance to relax which is everything for a carer – it helps give you the strength to carry on.”
This weekend, Emma and Stephanie will be taking part in the Birmingham Bubble Rush from Acorns.
The event, which is taking place at Cofton Park on Saturday (20 July), will see hundreds of bubblers (also known as participants) run, walk or jog around a 5km course through reams of multi-coloured bubbles.
The soapy spectacular is being held to raise funds for Acorns Children’s Hospice and the charity’s care for children and families across Birmingham and the West Midlands – families like Emma’s.
“Fundraising for Acorns is vital for children like Stephanie,” Emma said. “So please sign up and raise as much money as you can.”
Acorns provides palliative care for babies, children and young people across Birmingham and the West Midlands with life limiting and life threatening conditions, as well as support for their families.
The charity relies on fundraising by the local community to fund its vital services for children and families.
Rachel Farrington, Acorns Events Officer, said: “We’re so excited to bring Acorns Bubble Rush to Birmingham. Hundreds of people have signed up for this fabulously frothy 5km but we need all of our bubblers to raise money for Acorns. If every Bubble Rush participant raised £25, it would pay for three days of care at one of our hospices.”
Photo caption: Acorns soapy spectacular Bubble Rush is heading to Birmingham this weekend. Pictured are participants Emma Exton-Cook and daughters Stephanie and Chloe.
For more information or for interview, photograph or filming opportunities, contact the PR and Communications team:
Notes to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.
• Acorns is currently the UK and the world’s largest children’s hospice charity, as measured by the number of children it is helping to care for.
• It costs £27,000 every day to run Acorns services providing care for children and support for their families. The charity relies heavily on donations to fund the majority of its activities.
• To find out more about Acorns, please visit www.acorns.org.uk