Little Margot's legacy

Now a charity launched in the toddler's memory by her family and friends is doing all it can to help raise awareness and save lives.

Margot was diagnosed with an extremely rare dual lineage leukaemia in October 2013, aged 14 months.

Her father, Yaser, and mother, Vicki, who hails from Essinginton, along with their family and friends came together as Team Margot to raise awareness of her plight and others desperately seeking a blood stem cell donor match.

Within the first six weeks of launching the campaign, the charity, Delete Blood Cancer UK, now known as DKMS UK, received more than 50,000 requests for swab kits in the UK.

The likes of Steve Bull, Martin Clunes and Gary Barlow backed the appeal and hundreds of people came forward to take a swab test to help find her perfect match at an event in Tettenhall.

The worldwide search for a donor was successful and a bone marrow transplant went ahead in February 2014.

But tragically her leukaemia was just too aggressive and she relapsed in the summer, passing away aged two years and two months, on October 27, 2014.

The Team Margot Foundation was set up in January 2015 and has been focused on increasing the number of people on the stem cell register -specifically targetting people from black, Asian, ethnic minorities and mixed heritage backgrounds such as Margot.

"During the search for Margot's donor, my wife Vicki gave a live television interview where she said 'if you would be prepared to accept a donation of blood, an organ or stem cells then you should be prepared to give also. I like people to think about that," says charity co-founder Yaser.

The charity has launched a successful educational programme for primary school pupils which has been created in partnership with NHS Blood and Transplant.

The free, curriculum-linked resources aim to help children to understand why and how people give to help others, with blood, stem cell and bone marrow donations.

Yaser believes teaching children about the concept of donation will encourage them to become donors when they are older and may also encourage their families to take action.

"The hope is that young people grow up to be considerate citizens in society and they will think it's the norm to give blood and register as a stem cell or organ donor," says Yaser, who was awarded a British Empire Medal in the Queen’s Birthday Honours 2022 for services to Stem Cell Donation.

He would like to see mandatory teaching about blood, organs, stem cells and bone marrow characteristics introduced to the national curriculum for primary schools.

Another vital part of the charity's work is providing support to families of children receiving cancer treatment.

While Margot was being treated in hospital, Yaser and Vicki, who live in London, saw first-hand the difficulties some families faced.

"Vicki and I saw many families struggling to make ends meet so since 2016 we've been giving grants to families caring for cancer patients. It doesn't solve all their problems, but hopefully it helps," says Yaser.

Since launching the scheme, Team Margot has has issued more than 250 grants of £1,000, via its network of hospitals.

The application process has been designed to be as simple as possible as "are parents are going through enough" and the one-off grants are made on a “no strings attached” basis, for the family to use in any way they wish.

Team Margot is also in the process of setting up a new All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT).

It aims highlight this urgent need for donors from ethnically diverse communities and to advocate the required change.

Yaser said it had been inspired by the issues they faced while trying to find stem cell donor for Margot as her mixed family heritage was an obstacle to finding her perfect match.

The group is calling for mandatory accurate recording of NHS patient and donor ethnicity and the modernisation of existing NHS patient and donor categorisations to reflect the make-up of today’s society.

It also wants a single recruitment criterion for potential donors of stem cells or bone marrow.

Yaser says at the moment potential donors face being put off because of a confusing process with different organisations setting different criteria.

"People are bewildered by all these choices. Right at the point where people want to sign up, we make it difficult."

He believes a single set of criteria would "cast a wider net" increasing the number of donations and ensuring people aren't deterred at the first step.

The group is also calling for a requirement that all adults in the UK actively make an express decision on their donor status for blood, organs, stem cells and bone marrow - and regular affirmation in line with census thereafter.

Currently the 'opt-out' system in England means that all adults are considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups.

Families and loved ones will always be consulted before organ donation goes ahead and clinicians will not proceed with organ donation if they object.

Yaser believes that allowing people to make an express decision would reduce the number of people potentially having their wish to donate being overturned by grieving relatives.

He says it's important that people have the conversation about their decision with their loved ones before it's too late.

"It's a conversation that not enough people have. Have this conversation with you loved ones and let them know how you feel."

Yaser says he is very grateful for the support Team Margot continues to receive from well-wishers in the Midlands, which has included fundraisers carrying out a charity walk between the stadiums of Blues, Villa, Albion, Walsall and Wolves in July.

"We've had long-standing, phenomenal support from the Midlands. They are Team Margot."

For more information about the charity's work, see www.teammargot.com