A family from Telford have launched a campaign and a charity single to raise funds and to get more potential lifesavers on the Anthony Nolan register, after finding a bone marrow match for their daughter Lauren – who is their ‘ray of sunshine’.
Thanks to a mystery donor, eight year old Lauren is due to have her potentially life-saving transplant after Christmas.
“It’s amazing that strangers do this. Words can’t express how grateful we are,” said Lauren’s dad Lee. “We saw so many other children in hospital waiting for a transplant – this is for them.”
The single, ‘The Sun’s Gonna Shine On You’, was launched on Monday 8th December and is from a group calling themselves ‘Lauren Edwards’ All Stars’.
The song was written and produced by John Wilkinson from Liverpool (who doesn’t know the family) John was joined in the vocals by A Choired Taste a local choir to the family , who were all so touched by Lauren’s campaign they wanted to do something, and Lauren proudly designed the cover herself.
Lauren's story
Lauren Edwards was born in June 2006, and after only a few days at home she fell ill. Lauren was admitted to hospital with a suspected infection and when her condition didn’t improve, detailed tests were carried out, which resulted in her being diagnosed with Leukocyte Adhesion Deficiency 1 (LAD type 1) at just two weeks old.
LAD is rare immune deficiency that means Lauren’s body does not allow her body to fight bacterial infections. Lauren was transferred to Great Ormond Street Hospital for treatment, where the family were advised that the only treatment for her condition was a successful bone marrow transplant. Without one Lauren would continue to fall ill.
The family learnt later that Lauren also had a rare tissue type, and finding a perfect match for Lauren on the Anthony Nolan bone marrow register would be difficult.
Lee said, “She is our beautiful, happy and a little bit cheeky little girl who is so full of life and has gone through so much already. She doesn't seem to let things faze her and keeps us going never mind the other way round!
“Lauren likes to be different (which we love) but not only is Lauren’s condition very rare, she seems to have an extremely rare tissue type, which has caused problems in finding a suitable match.”
After many months in and out of hospital, with various infections, a partial match was found and Lauren had a transplant in Great Ormond Street at the beginning of 2007.
Unfortunately the transplant was unsuccessful, meaning Lauren would need a second transplant at some stage. There was no suitable match at the time that could be used, so the only option left was to manage Laurens post-transplant side effects, and treat her as and when she fell ill with infections.
In July 2014, Lauren developed a serious fungal infection in her airways, which resulted in her being rushed into theatre in GOSH (Great Ormond Street Hospital) to have a Tracheostomy fitted, to allow her to breathe while she received treatment for the infection.
The family was told that Lauren needed a transplant urgently and we found a second donor in Germany. The family are now waiting for the transplant to happen after Christmas.
“It’s not a perfect match but we feel incredibly lucky to get a second match for a transplant that she desperately needs,” Lee continued. “We now just want to get as many people on the register as possible; we’re doing it for other families. In our time in hospital we’ve seen so many other children and families waiting for a transplant, so this is for them.
'All we ask is that you take a moment to register as a donor'
“There are no words we can use to express thanks to our donor. Without them, we just wouldn’t know where we’d be. Words can’t describe how grateful we are that they signed up and they are continuing on this journey. One day I’d love to meet them and shake them by the hand.
“You just don’t realise how important it is until you go through it yourself. Everyone just thinks ‘won’t happen to me’. But this really saves people’s lives. It’s amazing that strangers do this, there are some incredible people out there.
“We are so proud of our daughter all we ask is that you take a moment to go to the Anthony Nolan website and register as a donor.”
Ann O’Leary, Head of Register Development at Anthony Nolan, said: “Lauren is clearly a ray of sunshine for her parents and they are one of many families reliant upon other selfless strangers to join the register and pledge to save a life by donating their stem cells.
“What many people don’t realise is how easy it is to join the bone marrow register – it simply involves filling in a form and providing a saliva sample."
How you can help
If you are aged 16–30 and in general good health, you can join the Anthony Nolan register by clicking on the button below:
To buy ‘The Sun’s Gonna Shine On You’ charity single go to iTunes or Google Play
To keep up to date with Lauren’s journey visit the family’s Facebook page Bone Marrow Match for Lauren.