23 July 2018

The value of children’s medical research

Helen with her three children

Helen, whose daughter Ella has spina bifida, on sharing her family’s story – and why she wants to remind people of the value of children’s medical research. 

In April, Craig and I had the honour of attending the ‘Sparks Charity Thank You’ reception at The Royal College of Physicians in London. Sparks is a charity that we feel proud to be involved with; a charity that focuses completely on children’s medical research and is part of the GOSH charity family. Sparks is the charity that many of our incredibly generous friends and family donated to when Ella completed the Superhero Triathlon last year.

We were invited to the event as I had been asked if I would be prepared to share Ella’s story with the guests. I was very nervous about the idea as I had never spoken at an event like that before and I was aware that there would be several celebrities there, including sports presenters Gabby Logan, Amanda Davies and Anna Walker, as well as some influential research fellows and major Sparks donors. However, when I was told that sharing Ella’s story might help remind people of the value of children’s medical research and the need for further funding, in a very underfunded area of research, I felt compelled to say “yes”. I also quite liked the idea of being able to get dressed up for an evening!

When we were in the taxi on the way to the event (I declared I couldn’t walk any distance in my heels – I’m much more comfortable in my wellies and trainers these days), I was feeling incredibly nervous! But I just had to keep reminding myself about the potential benefit that my talk might bring to the charity.

Sharing Ella’s story might help remind people of the value of children’s medical research and the need for further funding in a very underfunded area of research.

When we arrived at the venue, we were welcomed so warmly by the Sparks team, including the CEO of Sparks, Tim Johnson. I was shown where I would be standing and which photos of Ella and our family they had chosen to show on the slides as I spoke. Everyone really did their best to make me feel at ease and, before long, I did relax (a little!). We got chatting to another Sparks family and the time leading up to the talk flew by. It was amazing to talk to another family because, although the conditions our children live with are very different, our lives as parents are very similar – the anxiety, the feelings of helplessness, the uncertainty. But, like us, they try to remain very positive and that certainly shone through in everything they spoke about.

Although the conditions our children live with are very different, our lives as parents are very similar – the anxiety, the feelings of helplessness, the uncertainty.

Just after 7pm the time for the talks came. I was introduced by Gabby Logan who was absolutely lovely and who also did her part in trying to make me feel at ease. As I stood up at the lectern with the microphone in front of me looking out at all the faces I did feel completely out of my comfort zone. As I started talking I decided to move away from my prepared beginning and share how nervous I was with everyone. I explained how that same morning I had been on the Cornish cliffs at 6:30am in my wellies walking the dog and practising my speech! This reference back to the reality of my everyday life helped me feel a bit more at ease – and it gained a few chuckles from the audience too.

I made my way through my speech without too many wobbles or ‘ums’ and then was truly able to relax into the evening. Everyone was so friendly and we found out about some incredible research work that Sparks is currently funding and met some truly inspirational people. One lady approached me and commented on how valuable she felt one of my lines had been. I can’t claim the line as my own I’m afraid – it was “the gift of research is a gift that keeps on giving”. As a family we certainly believe in this and we hope that Sparks is able to attract more and more sponsors and donors who feel the same way.

Ella, smiling

When I shared our story with others, and received their feedback, it reminded me of just how incredibly resilient and determined Ella is to manage all she does and to still maintain that beautiful smile that she so readily shares with the world.

It was an amazing evening to be a part of and we were reminded of how amazing Ella is. Whilst we do find daily life a challenge (Ella’s condition is still not stable), we are just so used to it now that it becomes part of what we do. However, when I shared our story with others, and received their feedback, it reminded me of just how incredibly resilient and determined Ella is to manage all she does and to still maintain that beautiful smile that she so readily shares with the world.

Your donations help fund research into conditions like spina bifida.