Margot, July 2014

When our 14 month old daughter, Margot was diagnosed with a rare blood cancer, doctors told us that she needed a stem cell transplant to stand the best chance of survival. Prior to that, I hadn’t heard about stem cell transplantation, nor did I appreciate how Margot’s mixed family heritage would play a vital role in the donor / patient matching process. Because nothing can happen without a donor. 

The search for Margot’s donor began with her siblings, but neither of her brothers were a match. To try and better understand what was involved, Vicki and I met with Dr Daniel McCloskey, a tissue typing expert. We wanted to understand whether it was possible to target specific communities to improve the chances of finding Margot’s genetic twin. We soon learned that in her case, it wasn’t.

Margot on her second birthday

A “suitable match” was eventually found and Margot  had a stem cell transplant a few months later. Margot  relapsed shortly after and died 8 months post transplant. 

I learned that Margot’s mixed heritage was the key obstacle to finding her a “perfect” tissue-type match, because of the lack of diversity on the worldwide stem cell registers.

I found the period of time between Margot’s diagnosis and transplant  extremely unsettling, being fraught with fear, uncertainty and doubt. Vicki and I were trying to care for Margot and balance family life at home alongside hospital commitments, all the while campaigning to encourage as many people as we could to join the stem cell register. 

Peter with his wife, Jen and sons, Max and Seb

In Margot’s case, this period of time was around four and a half months. For Peter McCleave, it has been seven years. And he is still looking for a stem cell donor match today.

In December 2019, Team Margot Atlantic Rowers embarked on The Talisker Whiskey Atlantic Challenge, a 3,000 mile rowing race with Peter at the centre of the campaign

Peter  was diagnosed with myeloma, an incurable blood cancer, in 2017. We met about a year later and have been like-minded, kindred spirits since. 

I have an enormous admiration for Peter and can only imagine how the fear, uncertainty and doubt that I experienced during Margot’s donor appeal is heightened for Peter and his family, because Peter is himself the patient and because his search has been such a huge part of his life, and for so long.

Registering people as stem cell donors with Peter in La Gomera, prior to the start of the Talisker Whiskey Atlantic Challenge

A great deal has been written about Peter and rightly so. He is a driven, high performance individual with a mixed heritage that remains the key obstacle to finding his own matching donor. However, that hasn’t stopped him from trying.

When Peter was a member of the Stem Cell Diversity Group, part of the NBTA

Peter has signed up more people to the stem cell registers than almost anyone, anywhere, with his 10,000 donors campaign chalking up around 100,000 more donors onto the registers than it first set out to achieve. The single exception that I’m aware of being the gentleman that founded DKMS 30 years ago; it’s now the largest and most successful stem cell register in the world. Fitting then, that Peter is now managing director of DKMS UK.

Our 2019 Atlantic Rowing campaign vehicle – see video below. Peter with Dr Daniel McCloskey, who became a trustee of Team Margot Foundation

Peter is English, Irish and Macanese (his father’s maternal family hail from Macau). A few months ago, Peter told me of his plan to visit Macau and invited me to join him. He has said that this will be the last of his 10,000 donor projects, and a final chance for him to attempt to find a match for himself.

At the DKMS Gala with Orin Lewis OBE

The idea is for him to spend 10 days in the region campaigning, promoting, presenting and hopefully through the Macau Blood Transfusion Centre, registering people as stem cell donors. Today, I am flying out to join him for a few days, to help in a supporting role / in whatever way I can.

By publicising the need for more donors within the Macanese community and by running a focussed campaign – something we weren’t able to do for Margot – there’s still a chance Peter could find his stem cell match. But regardless of whether a match is found for him, this latest campaign will help spread awareness about the importance of growing diversity on the stem cell donor registries for patients like Peter, Margot and others with mixed heritage – and perhaps even you.

Team Margot
Together, saving lives

Yaser

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015), Humphrey (2017) & Margot (2012-2014)