After Ronnie Manders was born with a rare form of childhood leukaemia, his family began rallying – both to add more donors to the Anthony Nolan register, and to raise lifesaving money in support of our research. This is the story of an amazing family – Ronnie’s family.
On the 12th August 2011, our second beautiful son was born, weighing 7lb 11oz. We named him Ronnie Harvey Manders, and we were all smitten – especially his older brother James Thomas.
But quickly it became apparent to us that all was not well with our boy. From a very early age, he would catch any and every infection, bug and illness going around, and would normally end up hospitalised due to them. We were in and out of hospital over 8 times by the time he was 6 months old.
Then it got worse. Ronnie would cry in pain if you tried to hold him, barely ate, and couldn’t sleep for more than an hour at a time. A few doctors thought I was a crazy mum; one told me to take Ronnie home and enjoy him as he was perfectly healthy, but I knew my son and I knew something was wrong, very wrong.
Eventually we found a doctor who took us seriously, and sent us to the Birmingham Children’s Hospital, where after a lot of tests he was finally given a bone marrow aspiration and biopsy.
The news came quickly and devastatingly. It was discovered that Ronnie had JMML (Juvenile myelomonocytic leukaemia), a rare childhood cancer that can only be treated with a full stem cell transplant.
He was just 10 months old.
We went into action trying to find a match for Ronnie, and quickly realised how many other people were searching for lifesaving matches. And so we started holding donor rallies to educate and get as many people signed up to the Anthony Nolan register as possible.
Ronnie was deteriorating rapidly and no match was to be found for him, so his dad donated his cells, which were only a 50% match.
Ronnie fought hard and strong, but after relapsing early after the first transplant and needing another so soon afterwards, his body became too weak. At 22 months old, after fighting all his short life, Ronnie passed away at the Birmingham Children’s Hospital.
Our lives would never be the same again, and we realised we needed to do everything in our power to stop this happening to other families.
Rallying for Ronnie
And so we started fundraising, as well as asking people to sign up to the register.
We have raised money in many ways: we sold charity bands, organised balloon races, a Christmas card competition, held many charity football games and tournaments, raffles, children’s parties, made and sold Christmas tree stars, and much more.
We are very lucky to be so well supported. People have raised funds on behalf of Rally for Ronnie, doing their own things and donating the money to us.
To date, we have signed up well over 500 people and we have raised over £70,000. We have five people running the London Marathon this year for Rally for Ronnie, and we had people do the RideLondon 100-mile bike ride.
In 2016 we held the Rally for Ronnie Charity Ball, earning just over £20,000 in one evening of charity games, raffles and auctions – in 2017 we will be holding our second ball. We have been collecting some great prizes over the last 12 months, and hope to raise a good amount again!
With some of the money we earned at the Ball, the Anthony Nolan labs were able to buy a new centrifuge machine, to help with their research into stem cell transplants and how to make them more successful.
In January 2017, we were invited down to the labs in London to have a look around and see Ronnie’s machine with his plaque on.
It was an amazing day for us all, but especially Ronnie’s brother James Thomas, who is really into his science.
Everyone we met at the labs had so much time for us and explained to James Thomas what all the machines were for and what research they were doing with them. They even let him have a look through a microscope at some cells!
We had a fantastic day and it really spurred James Thomas on to talk to his Headmistress and his School Council to ask them to help fundraise for Rally for Ronnie too. He was asked to do a presentation to the school council, and they are now looking into some fundraising ideas.
There will always be a future. We will never stop Rallying for our beautiful blue-eyed boy.
We would love to take our fundraising to over £100,000, and with the London Marathon team this year and the second Rally for Ronnie Ball, we hope we won’t be far off this figure by the end of 2017.
Currently, we’ve heard about five people who’d signed up to the register as the result of Rally’s campaign, who’ve now been called up to donate their stem cells to someone in need. It is a fantastic feeling, knowing Ronnie could have helped save somebody’s life!
Many more have also been asked to be tested to see if they are the best match for someone in need of stem cells.
We are always talking to people about signing up or donating their umbilical cords if they give birth at a hospital that will collect them.
So we hope that many more lives can be saved by our Ronnie. Mainly we don’t want Ronnie to be forgotten and we don’t want him to have suffered for nothing.
Any support anyone can give to Anthony Nolan is a huge help.
Whether you sign up as a donor or donate a few pounds, every little helps. Don’t put it off by thinking that there will be someone else out there with the same tissue type as you, able to donate to someone in need, because that simply is not the case.
Ronnie never got his full match, and if he had, things could be different.
However, we can all help other people get their match, and keep the legacy of our beautiful blue eyed boy Ronnie alive.