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

Nerfmother Thu 30-Jan-14 20:10:34

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

Hedgehog80 Thu 30-Jan-14 20:29:54

I registered last week after crying watching the news.

LindaMcCartneySausage Thu 30-Jan-14 20:31:18

I registered last week.

CJMommy Thu 30-Jan-14 20:32:44

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

DialsMavis Thu 30-Jan-14 20:39:29

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.

Mercedes519 Thu 30-Jan-14 20:58:00

Just done it. All the best for Margot

silverdragonfly Thu 30-Jan-14 21:03:39

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

JacqueslePeacock Thu 30-Jan-14 21:07:49

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

FreeAtLastAtLongLast Thu 30-Jan-14 21:10:02

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

Middleagedmotheroftwo Thu 30-Jan-14 21:18:33

Just registered. Good luck x

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

hefner Thu 30-Jan-14 21:35:56

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.

elastamum Thu 30-Jan-14 21:48:23

just registered - only took 5 minutes

NK5BM3 Thu 30-Jan-14 21:52:12

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'?

Kefybaby Thu 30-Jan-14 21:53:27

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

namelessposter Thu 30-Jan-14 22:07:33

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

WetDogLovesHubert Thu 30-Jan-14 22:24:39

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

champagnegoldfinch Thu 30-Jan-14 22:41:00

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

champagnegoldfinch Thu 30-Jan-14 22:41:47

Oh, thanks Hefner. Just spotted your message.

MsInterpret Thu 30-Jan-14 22:46:39

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.

SpanielFace Thu 30-Jan-14 22:47:11

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

eveylikesv Thu 30-Jan-14 22:51:59

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

TallGiraffe Fri 31-Jan-14 03:19:12

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

giraffesCantMakeResolutions Fri 31-Jan-14 03:35:32

Already on the register.

Never heard of ALL and AML together before - how crap sad

Thinking of you x

She is just adorable!

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 http://www.deletebloodcancer.org.uk 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

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

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.

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?

bodandbagpusssittinginatree Fri 31-Jan-14 16:35:17

Done. Best wishes to Margot.

Tootsgirl Fri 31-Jan-14 16:48:10

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

JimmyCorkhill Fri 31-Jan-14 17:01:09

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

JuicyJ Fri 31-Jan-14 17:11:29

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 ;)

FourAndDone Fri 31-Jan-14 17:14:20

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

I've also registered. Xx

Housemum Fri 31-Jan-14 18:16:00

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

Mama1980 Fri 31-Jan-14 18:34:10

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.

HorsePetal Fri 31-Jan-14 18:53:33

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

poopooheadwillyfatface Fri 31-Jan-14 19:00:46

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

LaLaLeni Fri 31-Jan-14 19:09:12

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.

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

smileyhappymummy Fri 31-Jan-14 19:40:52

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.

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

NoToast Fri 31-Jan-14 20:42:00

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.

lilyloo Fri 31-Jan-14 21:18:04

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

sweetooth01 Fri 31-Jan-14 21:22:08

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

expatinscotland Fri 31-Jan-14 21:26:44

Bumping for Margot.

CQ Fri 31-Jan-14 21:39:08

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.

Sliceofcake Fri 31-Jan-14 21:59:25

Registered just now, really hope you find a donor x

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.

Puffykins Fri 31-Jan-14 22:29:36

So much love to you all xxxx

Puffykins Fri 31-Jan-14 22:34:59

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

expatinscotland Fri 31-Jan-14 22:43:28

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

MrChow Fri 31-Jan-14 22:53:50

Registered and will get my OH too as well.

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

I saw Margot in the i newspaper today. I really hope you find a match for your beautiful girl.
Unfortunately I cannot register (medical exclusion) but will be sharing your story xxx

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.

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

Kate090 - I have reported your post. Spamming is against the rules, but on this particular thread it is completely inappropriate. You should be absolutely ashamed of yourself.

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

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

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