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KateMumsnet (MNHQ) Thu 30-Jan-14 20:07:31

Could you be a match for Margot?

When your child is diagnosed with leukaemia, the world crashes down. A bone marrow transplant can offer the best hope of recovery - but when your child is dual-heritage, finding a donor can be like finding a needle in a haystack. Can you help Margot?

Victoria Martini

Margot's mother

Posted on: Thu 30-Jan-14 20:07:31


Lead photo

Margot, shortly before she was diagnosed with dual lineage leukaemia

I love these pictures. They were taken in our garden on a sunny afternoon in the summer when Margot was a little over a year old, and was crawling around on the lawn. She was in typically smiley mood and was sporting a new dress and wearing a bow in her hair, which has become her ‘signature look’. We had a really good laugh rolling around the lawn that day, and she was thrilled to be sitting on her brother’s tractor and smiling for the camera. She’s the little girl we always dreamed of - and we felt so lucky.

I also love them because it reminds me of a time before Margot became desperately ill with a rare form of leukaemia. A short while after these pictures were taken she'd thrown up - become dreadfully bruised and very, very pale; soon after that we discovered that Margot has what is called a 'dual lineage' leukaemia. This means she has acute lymphoblastic leukaemia and acute myeloid leukaemia.

Doctors at Great Ormond Street hospital say they have only seen three such cases in the past ten years. One moment we were all playing in the garden. The next, we were in paediatric intensive care, watching our daughter struggle for life; tubes everywhere.

After various rounds of tests and chemotherapy, the doctors at Great Ormond Street told us our best chance of beating the disease is a bone marrow transplant (also known as a stem cell transplant).

Finding a donor is itself is a lottery - but Margot’s case has been made much harder because of our multi-cultural background. Her genes and tissues come from are a wonderful rich mix – my family is from England and New Zealand, and my husband Yaser’s family from Syria and Thailand and Scotland. It means the chances of find that perfect match are tougher than ever.

It will literally take just five minutes of your time: you're sent a simple DIY swab kit, which has long sterile cotton buds that you rub gently on the inside of your cheeks.

We're by no means the only ones - thousands of ethnically-mixed families across the world are finding it harder than ever to find a genetically comparable match. We have all moved around a lot in the past hundred millennia, but genes tend to be even more mixed within the black and Asian community, simply because of the variety of continents people have migrated to and from. But in the UK only 6 per cent of those on the registry currently are of a black and ethnic minority - something Delete Blood Cancer UK are working hard to raise awareness about in various ethnic communities.

Margot’s match does not have to have exactly the same combination of ancestors as us - that would be very hard to find. It just has to be a match - so it could be anyone from anywhere, which is why we are pleading with you to register with Delete Blood Cancer UK.

It will literally take just five minutes of your time: you’re sent a simple DIY swab kit, which has long sterile cotton buds that you rub gently on the inside of your cheeks. These go back in to the envelope provided for return to Delete Blood Cancer UK, and a short time later you then become part of a worldwide database of benevolent people who may be called upon to donate blood stem cells. If you are approached to be a donor, it’s all anonymous and you stay on the register until your 61st birthday.

We’ve created an appeal video on YouTube - please do share it. We want as many people as possible to come together to support and fight for our feisty little girl and others who have blood cancer. It only takes one person to save a life.

The doctors tell us that our chances of finding a perfect match for Margot are really very slim, but we believe that a slim chance is better than no chance. As any parents would, my husband and I feel we need to do everything we can for Margot, and others like her. I don’t want to look back and think we have not done everything we possibly could.

I know you are all so busy - but if you could register and swab, we would be so grateful. Or, if you live in the area, we'd love to see you at one of our forthcoming donor drives in London or Wolverhampton.

By Victoria Martini

Twitter: @swab4margot

whatshallwedo Fri 31-Jan-14 23:26:32

I really wanted to register but I have one of the conditions listed so I am unable to sad

TeamEdward Fri 31-Jan-14 23:27:37

Message withdrawn at poster's request.

Redjenjen Sat 01-Feb-14 02:11:25

Hi I've registered for the swab kit if I can make it down to Wolverhampton later this month I'll go to the donor day. Hope you find a match soon. xx

lyndie Sat 01-Feb-14 07:03:06

I've registered and donated. I didn't realise it costs the charity £40 to process each sample so when you sign up they ask you to consider making a donation towards the costs associated with registering.

stainesmassif Sat 01-Feb-14 08:05:17

Just registered and shared the page on my fb. Much love to you cx

SanctiMoanyArse Sat 01-Feb-14 09:11:53

Already on the register because of a friend also seeking a search for similar heritage reasons. I hope you find your match and wish you all the luck in the world x

RegainingUnconsciousness Sat 01-Feb-14 09:13:56

I registered just after Xmas, after discovering I'm too old for Anthony Nolan Trust!

Just shared on fb too.

Lastofthepodpeople Sat 01-Feb-14 09:31:56

I didn't know about this. I've signed up and shared on FB.

Quinteszilla Sat 01-Feb-14 11:21:52

For those of you London peeps who want to pop in to the sessions scheduled in Notting Hill and East Sheen:

Saturday 1 February 2014

Between 11am – 4pm

at The Tabernacle, 34-35 Powis Square, Notting Hill, London, W11 2AY

Sunday 2nd February 2014

Between: 10am – 4pm

at Sheen Montessori Nursery, Palewell Common Drive, East Sheen London SW14 8RE

More information about it all on the FB page

issynoko Sat 01-Feb-14 14:59:48

Also curious about the age difference with Anthony Nolan trust. I am 43 and too old for that register but will sign up for this. Thoughts are with you and your family. What a gorgeous little girl Margot is.

expatinscotland Sat 01-Feb-14 15:27:46

'Also curious about the age difference with Anthony Nolan trust.'

Sadly, it costs money to test all the samples. The government/NHS do not provide funding for this. The best donors are young males between 18-30, they produce more cells. And older donors are usually not used for children/young patients unless absolutely necessary because of failure risk.

But older donors are fine to use for older adults wink.

Practicalpam Sun 02-Feb-14 13:27:27

Thanks for that explanation expatinscotland. Will now try to share with young males. smile

WalkingThePlank Mon 03-Feb-14 10:05:26

I registered about 12 years ago and was a possible match for someone but nothing came of it. I was at a different address. I'm now wondering whether I have to notify them of my change of address or is it enough that the NHS knows where I am?

raydown Mon 03-Feb-14 10:15:36

Yes, I think you need to tell them your new details.

DrMaybe Sun 09-Feb-14 17:03:54

Message withdrawn at poster's request.

Eastpoint Thu 10-Apr-14 13:00:37

Great news, Margot has left Great Ormond Street Hospital today.

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