Advanced search
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

giraffesCantMakeResolutions Fri 31-Jan-14 03:38:19

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.

FortyFacedFuckers Fri 31-Jan-14 08:35:35

I am all ready on the donor register I hope you get your match.

JustAfloat Fri 31-Jan-14 09:57:49

I'm not able to register but my DH has. He's just received the pack and will be sending it off shortly.

Best wishes to the family.

LESuffolk Fri 31-Jan-14 11:01:51

My daughter has a rarer blood group. She will register.

MissHC Fri 31-Jan-14 12:01:24

Registered. I hope that if I can't help Margot I can help someone else.

ProfondoRosso Fri 31-Jan-14 12:05:57

I'm on the register. It's so, so simple to join. Just request one of the packs from the Anthony Nolan website and send it off. Wishes for health and happiness to the beautiful wee Margot and family.

CatAndFiddle Fri 31-Jan-14 12:50:05

Already on the register after a heartbreaking local appeal some years ago. I hope you find a match for Margot x

NotInGuatemalaNowDrRopata Fri 31-Jan-14 12:50:24

I registered after seeing the picture of your dear wee girl. I wish you so much luck and pray that I might be a match as we have a tiny bit of background in common (the clue is in my username).

LetsFaceTheMusicAndDance Fri 31-Jan-14 13:09:03

Registered. I had a grandmother who may well have been mixed race. I hope you find a match.

aristocat Fri 31-Jan-14 13:11:27

Another here from Wolverhampton, hope you can find a match for your beautiful girl.

HellsGranny Fri 31-Jan-14 13:38:14

Registered and I hope you find a match for Margot soon x

CouthyMow Fri 31-Jan-14 14:15:44

I have been on the register since my DD's friend was diagnosed with AML.

I wish you the best of luck with your search. thanks

IPokedABadgerWithASpoon Fri 31-Jan-14 14:30:44

I've just registered too

RnB Fri 31-Jan-14 15:14:46

I am mixed race and already on the register. I wish you and your beautiful daughter the best of luck x

lynniep Fri 31-Jan-14 15:23:21

My heart goes out to you and your family. I am of mixed race and I've just registered. I so hope you find your donor.

Practicalpam Fri 31-Jan-14 15:31:40

Always thought I was way too old for this (mid 40s). Anyone explain why the age criteria for Anthony Nolan is 16 - 30 whilst with it is 18 - 55? Anyway, I'm delighted and will now send off for my pack to join register. Perhaps, Victoria, you should put this age range in your post as maybe many like me think they are too old when they are not. Best of luck finding a donor for Margot. x

CatThiefKeith Fri 31-Jan-14 15:43:45

I have just filled out the form and will send my swab back as soon as it arrives. I also hope you find your donor.

shanshan2013 Fri 31-Jan-14 15:47:09

I've just signed up, couldn't bring myself to close the web page without doing it. I hope you get the treatment you deserve Margot xx

Pregnantberry Fri 31-Jan-14 15:47:20

Just registered and am waiting for my swab kit! Best of luck in finding a match for Margot.

Mogz Fri 31-Jan-14 16:00:26

Awaiting my swab kit, I hope this appeal finds Margot her match as well as matches for many other children.

GossamerHailfilter Fri 31-Jan-14 16:00:48

I have been on the register for a while. I hope you find a match.

NoodlesDoodles Fri 31-Jan-14 16:14:19

I sent off for my swab kit last week after seeing Delete Blood Cancer advertised on the webpage for Channel 4's The Jump. Hope it gets here soon.

The DBC website says that if you're already registered with the Anthony Nolan Trust, you don't need to reregister. It costs £40 a time to process the kit too, so even if you don't feel comfortable registering, you can still help with a donation.

Egg Fri 31-Jan-14 16:14:58

Does anyone know how strict they are on the minimum weight limit to be able to register? I weigh about 7st 5lbs and have been able to give blood regularly as I am so close to their minimum weight of 7lbs 7. However I am not sure whether it would make a difference for this as the minimum is 7st 12.

MrsPixieMoo Fri 31-Jan-14 16:17:53

Registered. Am pregnant so will be 'inactive' for a while but really want to support your daughter and hope you find that elusive match. The wonder of social media is that so many people can be reached and nobody could watch the video and not be moved to action. Good luck to you and your family. I wish Margot a happy, healthy future.

ifyourehoppyandyouknowit Fri 31-Jan-14 16:30:08

If you're on the blood donor's bone marrow register, is that the same?

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now