We’ve been involved with helping raise awareness for Action Medical Research since Jessica was four. It’s a charity that is very close to our hearts as they are dedicated to funding research into medical conditions affecting children. Some of the projects they’ve funded have been specifically to improve treatments for children with hypoplastic left heart syndrome (HLHS), which Jessica was born with. We were delighted to be invited to their 70th anniversary event last week to share Jessica’s story and why supporting the work of Action Medical Research is so important to us. It is always a pleasure to be able to talk about Jessica with other people and it means a huge amount to us that sharing Jessica’s story can still help other families.
Action Medical Research – a brief history
Action Medical Research was founded by Duncan Guthrie in 1952 to try to find a cure for polio which affected thousands of children at the time, including his daughter Janet. Within 10 years, the first polio vaccines were introduced in the UK. Other big breakthroughs that have come about through the work of Action Medical Research include the discovery of the importance of folic acid in pregnancy to help prevent spina bifida, developing the use of ultrasound scans in pregnancy, developing advice to reduce the risk of stillbirth, testing the rubella vaccine, developing the Matrix Seating System for physically disabled children and contributing to the developing of cooling techniques to help prevent brain damage in babies.
Current projects include research into improving outcomes for premature babies, developing treatments of brain cancer in children, improving understanding of Long-Covid in children, improving outcomes for children with congenital heart disease, developing new drugs for treating epilepsy and research into a variety of rare diseases.
Their current appeal focuses on funding research into rare diseases. 30% of children born with a rare disease don’t make it to their fifth birthday. Research is so important for helping to try and improve the treatments and outcomes for these children and give more families hope for the future.
The 70th anniversary event
The 70th anniversary event was held at Mansion House, almost exactly 70 years on from the first event held there by Duncan Guthrie. There were displays around the room from some of the researchers whose projects are being funded by Action. One of these is a project looking at how reconstruction of the aorta can affect long-term survival in children with HLHS.
In another room, there was a display of some of the publications produced by Action Medical Research over the years.
There was a very official-looking lectern set up at one end of the main room for the speakers. The guests were all welcomed by Lewis Coghlin, the Fundraising Director for Action Medical Research who introduced each speaker, starting with Professor Sir Andrew Pollard, whose name you may recognise as being the Director of the Oxford Vaccine Group. We followed on to share Jessica’s story and then finally Karen Jankel, the daughter of Paddington creator Michael Bond, shared her stories of her long-term support of the charity. Paddington BearTM has been Action Medical Research’s mascot for over 40 years.
It was a lovely evening and we enjoyed chatting with people from Action Medical Research who we have met at previous events, or got to know via email, as well as the researchers and the other guests. It is always a joy to be able to talk so openly about Jessica. As a bereaved parent, people often shy away from mentioning your child through fear of causing upset, but the opposite is often true. It gives me so much pleasure when people mention Jessica to me. It means a lot to know that Jessica is still remembered and thought about, that her story is still important.
Our daughter Jessica was born with hypoplastic left heart syndrome in 2011. This is a condition where the left side of the heart is severely underdeveloped and meant that she was effectively born with only half a working heart. We first found out about her heart condition at the 20-week scan. A couple of weeks’ later we were told that Jessica’s heart condition was so severe that she was unlikely to be suitable for surgery. We were very fortunate to be given the chance to have pioneering in-utero surgery when I was 28 weeks’ pregnant to open up a hole in Jessica’s heart to improve blood flood and increase her chance of survival.
Jessica underwent several surgeries in her first year of life. The first of these took place when she was just a few hours old, followed by another a week later. She then had further surgery at four months’ old and seven months’ old. We then had a few wonderful years of a normal family life, enjoying time with Jessica and her heart-healthy sister Sophie who was born when Jessica was two. Jessica was a delightful little girl with the sunniest personality. Her godmother once called her a “joy-carrier” which was the most perfect description of her.
When Jessica was six, we found out that we were expecting another baby. Shortly afterwards, Jessica had her final planned surgery. This went well and after a period of recovery in hospital and at home, she returned to school in February 2018. Sadly she caught a series of viruses over the following weeks which her heart was unable to cope with and she collapsed unexpectedly in our bed and died in April 2018. Her baby brother, Thomas, was born three months’ later.
Living life without Jessica is the hardest thing we have ever had to do. We miss our beautiful sunny girl every moment of every day, but we will always be very thankful for the six and a half wonderful years we had with her.
Why supporting Action Medical Research is important to us
The research projects that Action Medical Research has helped fund have made a difference to many thousands of families and helped give them hope for the future. We benefited from pioneering in-utero surgery that gave Jessica a chance of survival. Without the developments in ultrasound scanning that Action Medical Research were involved in, we wouldn’t have found out about Jessica’s heart condition in pregnancy, not to mention other research into congenital heart conditions that took place before she was born that helped improve outcomes for all children like Jessica.
Funding into children’s medical research and the impact on treatments and improving outcomes makes a huge difference to so many families. To be able to watch your children grow and thrive and enjoy life is a huge blessing that many of us may take for granted. We knew throughout Jessica’s life that the future was never guaranteed. It made us try to make the most of the time we did have, to enjoy as many moments as we could and I will always be forever thankful for the time we were given.
We will always wish that we could have had more time with Jessica. Improving outcomes means that other families are given more time with their children. It means that more children are able to grow up and thrive; more families are able to make memories together. It means that there are fewer families like ours who are forever incomplete.
Thank you Action Medical Research for all you do to help improve medical treatments for children and thank you so much for inviting us to be a part of your 70th anniversary celebration. Here’s to the next 70 years and all the breakthroughs that will come through the work you do.