Parents of an inspirational teenager living with a condition that causes her muscles to weaken have spoken of the invaluable care and support they receive from East Anglia’s Children’s Hospices (EACH).
Bethany Smith has Mitochondrial Myopathy – a disease that came to light when she was a baby but was only diagnosed in 2018.
The 14-year-old and her family have been supported by EACH since early 2012 – initially at Quidenham (the charity’s former Norfolk base) and now at The Nook.
Dad Steve says without it, he cannot imagine how they would have navigated the ups and downs of the last 12 years.
“It’s hard to contemplate how different life would be,” he said.
“It’s been such a rollercoaster. We’ve had lots of highs and lows, and I don’t know where we’d be without EACH.
“It’s become such a huge part of our lives, and the people that work there are amazing.
“Naturally, there have been a few changes of staff, but everyone always remembers Bethany, and the first people we met are still at The Nook.
“It’s lovely to have such continuity, and Bethany also gets on well with some of the younger nurses and care assistants. She loves talking to them about Taylor Swift.”
Bethany’s condition affects her muscles and energy levels, meaning she uses a wheelchair.
Steve and his wife, Caroline, knew something “wasn’t quite right” when she was about six weeks old.
He said: “Bethany’s body, and especially her head, was floppy, and she was admitted to Addenbrooke’s Hospital, in Cambridge, in early 2012.
“They suspected it was a mitochondrial disease, but it wasn’t diagnosed until 2018.
“That’s not unusual, because it’s such a wide spectrum, and there are so many variations.
“When Bethany was diagnosed, she was only one of seven in the world with her particular type. We always knew she was one in a million, but that made her one in a billion!
“She really is a very special person with an incredible sense of humour and cheekiness, which we all love.
“She has a real determination, inspires us every day and has taught us so much, not only as parents but also as human beings.”
During her time at Addenbrooke’s, Bethany and her family, who live in Cringleford, were visited by an EACH counsellor from Quidenham.
“My only previous experience of a hospice had been an adult one, and, naturally, it immediately makes you think about end-of-life care,” said Steve.
“However, we were told about everything available to us, as a family, and it made us see things differently.
“We were probably a bit naïve, because we didn’t know any differently, and then we got to see a hospice with our own eyes when we went to Quidenham.
“From the moment we walked through the door, you could feel such warmth, and it felt a safe, comfortable environment.
“We were amazed and soon realised it’s not just the child that receives care and support – it’s the whole family.
“Everyone has always been friendly and welcoming, and we always feel looked after, whenever we go there.”
The Smiths have seen plenty of change down the years.
The organisation has grown, offering care to more children and young people, but Steve has fond memories of Quidenham.
One particular highlight from yesteryear was being invited to a gala dinner at the Natural History Museum, in 2016, organised to help raise funds to pay for The Nook. A film about Bethany was played, and the family met superstar EACH Ambassador Ed Sheeran.
“Quidenham was obviously a lot smaller and not a multi-purpose hospice, like The Nook,” said Steve.
“However, I liked the location and enjoyed the fact it was in the middle of nowhere.
“It was even hard to get a phone signal there, which was great because it helped us escape the rest of the world and focus entirely on Bethany.
“I remember going over a little bridge as you drove in, and it was like entering a very different, tranquil world.
“EACH has obviously changed so much in the years since, and now we love going to The Nook.
“Things are so much bigger and better than they could have been previously, given the space restrictions.
“It’s an incredible place. The facilities are first-class, and now we have the new accessible playground, which Bethany loves.”
As well as having fun on the swing and slide, Bethany also enjoys art and music therapy, the sensory room and spending time in the hydrotherapy pool.
Sister Bonnie, ten, also likes taking part in sibling days, which are specifically for the brothers and sisters of children receiving care.
“As a family, we’ve been included in countless events down the years, and both Caroline and myself have received counselling through EACH,” said Steve.
“It’s made a big difference, and the support really is there for us all, which we appreciate very much.
“When I retire, I’m going to become a volunteer and give my time to EACH.
“It’s given us so much over the years, and we’ll always be eternally thankful.
“One day, when the time’s right, I dearly want to give something back.”