Meet Ella

Meet Ella

Ella lives in Cornwall, with her older brother Harry, her younger sister Dulcie and their parents Helen and Craig. When Helen was pregnant with her second child, everything appeared to normal until the 37 week scan.

Helen explains, “I took a high dose of folic acid as there’s a history of spina bifida in the family. My brother was diagnosed with the condition and sadly passed away as a result, aged just 22.

“Ella was born very quickly, within 11 minutes of arriving at the hospital, and I could see straight away that she had an open hole at the base of her spine. At first they wrapped the hole in cling film so that no germs could affect her, then she was straight up to intensive care.

“Ella was transferred from Hertfordshire to Great Ormond Street Hospital. It was a special neonatal ambulance, which meant we couldn’t travel with Ella. When we arrived at GOSH Ella was already in her own room, in an incubator with 7 specialists surrounding her from surgeons to specialist nurses.

“The type of spina bifida Ella has is the most severe form of the condition. Her hole is located at the sacral region of her spine, so all the nerve damage is around the nerves responsible for her bowel and bladder.”

As a baby, Ella never crawled, only shuffled. She had to have physio early on as her muscles around the base of her spine developed differently. She started walking at 18 months old, but she has always had some difficulties with her balance because of her condition. Doctors told her parents that Ella may not be able to walk or ride a bike.

Over the years, Ella has had to endure multiple invasive procedures in attempts to enable her to have a manageable bowel routine. Now ten-years-old, her medical routine takes around 2 hours every day.

Ella explains, “The things that are difficult for me are my flush, my medicines, my operations and not being like normal people.”

Despite all of this, Ella’s cheery disposition doesn’t allude to such a challenging routine. Showing her strength and determination, Ella took on the Superhero Tri for Sparks charity in 2017, running and cycling with her family. For this year’s 2.6 Challenge for Sparks, the family chose to create all 26 letters of the alphabet using their bodies as a way to raise funds for research.

Craig, Ella’s Dad, explains, “Day to day the impact of Spina Bifida on Ella is the compromise in terms of her time. Almost certainly she is compromised psychologically as well. It gets to her emotional state, where she will just say ‘Why me?’”

“There is, I suppose, a positive spin. That Ella has got a life, and that is only thanks to medical research. 30 years ago, 40 years ago there would have been a strong possibility that Ella wouldn’t be here now.”

Reaffirming the importance of medical research Ella's mum, Helen, continues, “A friend once told me a phrase ‘the gift of research is the gift that keeps on giving’ and that definitely means so much to us. Without Sparks Charity funding the research, things won’t improve for children, things will just be at a status quo. We need that funding going forward - to make the quality of life better for our child and for other children.”

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