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Could you be a match for Margot?

90 replies

KateMumsnet · 30/01/2014 20:07

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.

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 - 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.

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Nerfmother · 30/01/2014 20:10

I am in the register and I wish you every success in your search.

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Edenviolet · 30/01/2014 20:29

I registered last week after crying watching the news.

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LindaMcCartneySausage · 30/01/2014 20:31

I registered last week.

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CJMommy · 30/01/2014 20:32

Already on the register but bumping for you as a fellow Wulfrunian! I hope your search is successful x

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DialsMavis · 30/01/2014 20:39

One of your lovely friends (C) volunteers where I work, she swabbed us all on Tuesday. My heart goes out to you all and I desperately hope you find a match soon.

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Mercedes519 · 30/01/2014 20:58

Just done it. All the best for Margot

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silverdragonfly · 30/01/2014 21:03

I saw Margot's story - it was circulated at work on Tuesday by someone who knows your family. It was the second story I heard in a week about a child with leukaemia who is being treated at GOSH. I have signed up with Delete Blood Cancer and will encourage other people to do so too. I already carry a donor card and I should have done this too years ago.

Your campaign will be making a real difference to so many people. I really hope you find a donor for your beautiful daughter. xxx

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JacqueslePeacock · 30/01/2014 21:07

If I am already signed up with the Anthony Nolan Trust, will I already be on the register?

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FreeAtLastAtLongLast · 30/01/2014 21:10

I'm on the Anthony Nolan register - does that mean my match potential is available to all? Sorry if that is a silly question.

I have everything crossed for Margot x

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Middleagedmotheroftwo · 30/01/2014 21:18

Just registered. Good luck x

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Purplehonesty · 30/01/2014 21:32

Will register and share up here in Scotland as that's one off your list.
Hope you find a match x

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hefner · 30/01/2014 21:35

I've just registered. Best wishes for Margot.

Jacques and FreeAtLast - deletebloodcancer.org.uk says you don't need to register again if you have already registered with Anthony Nolan.

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elastamum · 30/01/2014 21:48

just registered - only took 5 minutes

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NK5BM3 · 30/01/2014 21:52

My husband and I are registered with Anthony Nolan. Our children are mixed race so our heart goes out to you. Fingers v tightly crossed that some match will be found. Our son was/is also being treated at GOSH so you are in the best possible hands. Which ward are you at?

Have you thought about putting a call out to the other parts of the world where you have 'blood relations'?

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Kefybaby · 30/01/2014 21:53

I am very touched by your story. I have just registered and hope you have some great news soon. X

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namelessposter · 30/01/2014 22:07

Hi - a quick message from a friend in RL. You're doing an amazing job of raising awareness for sweet Margot; Mumsnet supports thousands of women and mothers through dark times (including me, several times). I know you'll find kindness and support here to help you and the family. Thinking of you all x

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WetDogLovesHubert · 30/01/2014 22:24

Just registered, thank you for the reminder. Best of luck to all those searching for donor matches.

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champagnegoldfinch · 30/01/2014 22:41

I'm on the Anthony Nolan register too. Has anyone found out whether that counts?

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champagnegoldfinch · 30/01/2014 22:41

Oh, thanks Hefner. Just spotted your message.

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MsInterpret · 30/01/2014 22:46

Just registered. Thank you for bringing this to the attention of such a wide audience. I wish Margot and you all the strength possible and hope some good news comes your way very, very soon.

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SpanielFace · 30/01/2014 22:47

What a beautiful daughter you have. I've just registered, wishing you all the luck in the world in finding a match.

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eveylikesv · 30/01/2014 22:51

I registered after seeing the appeal on news. I pray you will find the match. x

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TallGiraffe · 31/01/2014 03:19

I have an autoimmune disease so can't be a donor. Sad

I wanted to wish you and your family good luck for the future though Flowers

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giraffesCantMakeResolutions · 31/01/2014 03:35

Already on the register.

Never heard of ALL and AML together before - how crap :(

Thinking of you x

She is just adorable!

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giraffesCantMakeResolutions · 31/01/2014 03:38

champ yes anthony nolan is the register. Never heard of the one linked to here but all stem cell donation registers should be searched by the hospital.

If you are above the cut off age for anthony nolan you can register via the nhs one which I think gives you 5 more years.

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