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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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Tootsgirl · 31/01/2014 16:48

I'm mixed race too and have just registered. Hoping you can find a match for your little girl.

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JimmyCorkhill · 31/01/2014 17:01

I've just registered. Wishing you all the best.

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JuicyJ · 31/01/2014 17:11

I would very much like to register but as I have type 1 diabetes it means I am not eligible.

So sorry, I can't. She is absolutely gorgeous, if i could i would, good luck ;)

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FourAndDone · 31/01/2014 17:14

Iv just registered after seeing the mumsnet post on facebook.Smile

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MiaAlexandrasmummy · 31/01/2014 17:52

I've also registered. Xx

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Housemum · 31/01/2014 18:16

Am on NHS register as too old for Anthony Nolan, hoping you find a match

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Mama1980 · 31/01/2014 18:34

I hope you find a match your daughter is beautiful.
I'm sorry but having had lots of medical treatment myself I'm not allowed to donate anything but my family all are on the register already.
X

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HorsePetal · 31/01/2014 18:53

Thank you - have registered and will get DH and kids to do the same x

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poopooheadwillyfatface · 31/01/2014 19:00

I have registered. I can't imagine my children so unwell.

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LaLaLeni · 31/01/2014 19:09

I've registered and would give bone marrow, blood, even a kidney. I hope my health holds so if I'm a match I'll be able to help a family. My mum donated her organs, giving 9 people a chance, and if I could do something similar I'd be absolutely privileged. I hope you find a suitable donor soon, I've shared the campaign with everyone I know.

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honeybeeridiculous · 31/01/2014 19:36

Myself and DD have just registered, what a lovely little girl Margot is, I really hope you find a match

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smileyhappymummy · 31/01/2014 19:40

She is a beautiful girl. I am already on Anthony Nolan - just in case people don't realise Antony Nolan will accept you for bone marrow register even if you've had a blood transfusion, I did this after my dd was born.

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Whatevertheweather · 31/01/2014 20:19

I've also just registered. What a beautiful little girl Margot is - I pray that you find a match for her very soon

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NoToast · 31/01/2014 20:42

I have shared on facebook and contacted the register to find out whether diabetics (with Mody-an inherited type) are definitely excluded from registering. Does anyone else know?

I really hope Margot and others find their donors. Best wishes to you all.

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lilyloo · 31/01/2014 21:18

Have registered and shared on my Facebook Page, fingers x for your lovely little girl.

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sweetooth01 · 31/01/2014 21:22

Just registered after reading this. Wishing you and your family the very best

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expatinscotland · 31/01/2014 21:26

Bumping for Margot.

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CQ · 31/01/2014 21:39

I've just registered. She is in the best of hands at GOSH. It's a place of angels.

Praying for a match very soon for beautiful Margot.

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Sliceofcake · 31/01/2014 21:59

Registered just now, really hope you find a donor x

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PacificDogwood · 31/01/2014 22:01

If just sent my mouth swabs a couple of days ago.
I am too old to register with Anthony Nolan and was delighted when I found out about Delete Blood Cancer Smile.

Margot is just lovely. Her personality just shines out of those pictures. I very much hope you'll find a match very soon Thanks x.

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Puffykins · 31/01/2014 22:29

So much love to you all xxxx

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Puffykins · 31/01/2014 22:34

Oh, and for anyone in West London, there's a donor drive in Notting Hill tomorrow at The Tabernacle, Powis Square, from 11-4, at which you can register and swab. There's also a raffle (with fab prizes) a bake sale and various activities for children. The raffle and bake sale are raising money for Delete Blood Cancer, so even if you've already registered you can still come and give further support, should you wish to.
Then on Sunday there's a donor drive in East Sheen, again with a raffle and activities etc.
Go Team Margot! Xxxx

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expatinscotland · 31/01/2014 22:43

Bumping again. Registered a while back when our daughter was looking for a donor.

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MrChow · 31/01/2014 22:53

Registered and will get my OH too as well.

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whatshallwedo · 31/01/2014 23:26

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

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