In 2013, 14-month-old Margot Martini was diagnosed with blood cancer and required a bone marrow transplant (also known as a stem cell transplant) to stand the best chance of survival.
Margot had an extremely rare dual lineage Leukaemia with both Acute Lymphoblastic Leukaemia (ALL) & Acute Myeloid Leukaemia (AML). The consultant haematologist told us that he had only seen 3 such cases in 10 years.
Video blogs on the bone marrow donor’s journey, Margot’s transplant video, Team Margot donor registration events, our original appeal video for Margot & much more !
I can hardly believe that it’s already been a year since we sat on the SKY News sofa with Margot and launched our ‘Just One More‘ campaign.
So much has happened since. Sadly, not all of it has been good, but it’s comforting to know that what we are doing now as Team Margot is helping others and it’s a legacy for our daughter of which we feel proud.
A year ago there were around 900,000 people on the UK stem cell register and we decided to set an initial UK target of 2.5 million, which is roughly equivalent to 4% of the population.
Why did we choose this target ?
Simply because it’s the same number of people in the UK who give blood.
Why is that relevant ?
Well – blood donation is more complicated because it involves a needle and regular subsequent donations. By comparison, stem cell registration can be via a painless spit or cheek swab sample (DIY kits can be ordered online) and regardless of how you join, it’s a ‘one-time registration’ – once you’re on the register, you’re done and you don’t need to repeat / return.
Another reason is because only about 15% of the 2.5 million blood donors are also on the stem cell register. We suspect this number is only 15% because of a lack of awareness amongst existing blood donors that they are able to also join the stem cell register by giving an additional 5ml of blood the next time they go to donate. Hence our work with NHS Blood & Transplant.
Alongside this, we believe that the lower ‘barriers to registration’ offered by the spit & swab kits, the one-time simplicity of stem cell registration and improved information and awareness amongst the blood donor community ought to mean that our nation should be able to comfortably reach and then exceed this 2.5 million target over time.
The initial idea of ‘Just One More’ was that if each one of the existing potential donors were to encourage one more person to do the same as them, then we would very quickly see significant progress in terms of the number of potential stem cell donors on the register.
Today, there are a little over 1 million people on the UK stem cell register, so in spite of all our best efforts, these messages haven’t quite got through in any meaningful way… yet ! We accept that ‘Rome wasn’t built in a day’ and feel confident that over time and with your help, we will get there. Hence we continue to appeal for all the existing donors to encourage Just One More to register, as we did on BBC Radio London earlier this week.
The timing of the SKY News interview (click here to watch) came at a time when we all felt as though we were in a really good place. Whilst it was still quite soon for us to be overly confident, this was ‘Day 91′ post transplant and all appeared to have gone reasonably well. Margot was testing 100% donor cells in her marrow so we believed that the donor cells had dispatched the leukaemia and that Margot was now on the road to recovery.
We were all relieved and elated & were looking forward to bringing some sense of normality back into our family life, which had been massively disrupted following Margot’s diagnosis.
Three weeks and one day after this interview, everything changed for the worse & our world was turned upside down again.
Together, saving lives