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Nikki Search for Bone Marrow Transplant

Update (22 March 2015)
It is with unbearable sadness that we have to say that Nikki died on 21 March 2015.  She had received her transplant only 9 days earlier, but regrettably she suffered an infection and a range of other complications from which she never recovered.  We will keep Perfect Ten Match going as the need to recruit donors continues, but will be active in our campaign only when ready.

Nikki’s introduction (updated 12 March 2015)

My name is Nikki and I underwent a bone marrow stem cell transplant in March 2015.

I launched this website in 2014 in order to find a suitable donor to give me hope that I can recover from this disease.  I have now had my transplant, but I want to use the interest my story has generated to encourage others to register as a bone marrow stem cell donor, in order to help others in the future.

I was diagnosed with acute myeloid leukaemia. My disease has a rare cytogenetic abnormality called the ten-eleven translocation, which put me at a high risk of relapse following chemotherapy. This relapse has now occurred in September 2014 and the search is on.

My best chance of a cure was to have a bone marrow transplant.

My search for a bone marrow match has been complicated by me having extremely aggressive antibodies. A donor was found in France, but unfortunately they were only a 9/10 match. The best chance was a Perfect Ten Match but because of how my disease progressed, the fact that time was running out, and doctors had techniques to control my antibodies, my transplant went ahead with the 9/10 donor in March 2015.

I am no longer looking for a donor myself, but we need people to join the registers all the time and I hope you will read more about  my story and learn about how you can help others.

We continue to seek donors who may help others in the future

  • We encourage people from all backgrounds to join one of the bone marrow donor registers, but especially if you are from a black and minority ethnic or mixed heritage background, as people from these groups are less likely to have a well matched donor.
  • In the UK, you can join the Delete Blood Cancer register for those aged 18-55.
  • The British Bone Marrow Registry, also allows those to register aged between 18-49 and is easy if you already give blood.
  • Also in the UK, for those aged 16-30 can register with the Anthony Nolan Trust for those aged 16-30.
  • For information for donors worldwide – in particular Perth, Australia, where there is a large Anglo-Burmese community – please see the list of Bone Marrow Registers.
  • News outlets are welcome to use the Press Release & photo here.

Thank you for your help.

Best wishes

Nikki

 

76 thoughts on “Home

  1. Hi

    My name is kenneth donnelly im Irish and A+blood type i donate blood on a regular bassis im am registered on the irish bone marrow registery if i can br of help please contact me.

  2. Hi Nikki – I’m Irish O+ blood type and donate blood. I don’t think I’m on the Irish bone marrow registry but like Kenneth above – if I can help I will help.

    clíodhna

    • Hello, If you are not sure if you are registered with the Irish bone marrow registry, you can always contact them on +353-1-432-2897 to check. If you haven’t registered, then you just have to give a little more blood and they can add you to the register. Thanks.

  3. Hi I’m Irish living in UK, am on the British register pls let me know if I can help. Wishing you all the best in the world xxx

    • Hello, if you live in Ireland then you can register with the Irish Unrelated Bone Marrow Registry, Irish Blood Transfusion Service
      National Blood Centre, St. James’s Street, 8 Dublin, Ireland TEL: +353-1-432-2897 Website: http://www.giveblood.ie/bonemarrow If you live in the UK, then you can do so via Anthony Nolan or Delete Blood Cancer UK. All details are at the top of this page under the heading Bone Marrow Registers. Thanks

  4. Hi I just read about your search for a doner. I am mixed Irish and Asian but not sure what part of Asia. I would be willing to be tested if I can help at all.

      • I am Irish and my husband is Indian. I was told about Nikki by a friend and our three adult children phoned straight away to be tested, mentioning Nikki’s name. They all got very lukewarm feedback. They were told a swab kit would be sent out in the next few days. One of my sons was told the swab would then have to go to Germany to be matched and this would take three weeks. He was also told that they would only test immediate family faster. Mentioning Nikki’story name did not seem to make any difference.

  5. Hi my names Allie, I’m an 18 year old girl from Ireland and i live in England, blood type is o+ please email me if I can help you or if I can do anything for you!!

    • Hello Allie, you can help by registering either with Anthony Nolan (www.anthonynolan.org) or with Delete Blood Cancer UK (www.deletebloodcancer.org.uk). You only need to register online with one organisation, they will then send a kit to your home address. You complete the kit then send it back and that’s it. You may just save someone’s life. Thank you.

  6. Hey. My name is waqas . I m from Pakistan. South Asian ethic but living in ireland . I m 28. B+ blood group .I volunteer. If I can help please do let me know.

    • Thank you Rajat. We have linked to datriworld on this site and we know the main UK register contacts all the others worldwide. I will follow up directly with Anthony Nolan to make sure they link up. Thank you.

  7. Hi there, I’m irish, living in Ireland but have passed this into a friend I know in the UK of Irish/Burmese ethnicity which matches yours. The very best of luck to you.

  8. Heard of this through a friend at Towers Watson – have just registered with Anthony Nolan and passed on to some Burmese family and friends. Keeping fingers firmly crossed that we can help somehow.

  9. I’m on the U.S. registry. I don’t know if your doctors have access to that. Not sure if I can be on the UK registry. Happy to be tested again, though.

  10. Hi Nikki,
    I live in Brighton and I am also from Anglo-Burmese and Irish decent… Mixed with bit of English and Indian! If I can help I will, how do I go about getting tested? I will republish on my Facebook page so all my family can see.
    Suzie Miles

    • Hello Suzie, You can register with either Anthony Nolan (age criteria 16-30 years old) or Delete Blood Cancer UK (age criteria 17-55 years old). Their websites can be found by looking at the top of this page under Bone Marrow Registers. Thanks.

  11. Hi Nikki, I just registered with Anthony Nolan, so wanted to let know know. I’m half English and half Southern Asian with Portuguese heritage (Grandma’s name was Gomez). I’ve passed on your message to my brother, cousin and a couple of others. Is there anything further I can do to make sure my blood is checked against yours for a match?

    • Hello. In order to check whether you are a match for Nikki, you need to register as a stem cell (bone marrow) donor. You can do so by registering online with either Anthony Nolan (www.anthonynolan.org) or with Delete Blood Cancer UK (www.deletebloodcancer.org.uk). You only need to register online with one organisation, they will then send a kit to your home address. You complete the kit then send it back and that’s it. You may just save someone’s life. Thank you.

  12. Hi Nikki,

    I am Brighton based, and am 1/2 Chinese 1/2 Irish. I can’t donate blood as I’m a slight thing and fall just under the required weight… Does this matter with regards to what you may need?
    If I can be of any help, please let me know.
    Eve

    • Hello Nikki. To register with both Anthony Noland (age criteria 16-30 years old) and Delete Blood Cancer UK (age criteria 17-55 years old), you need to weigh over 7st 12 Ibs (50kg). I hope this helps. If you can’t register, then you can always try and encourage others to register. Thank you.

  13. Hi Nikki,
    I live in Brighton and I am also from Anglo-Burmese and Irish decent… Mixed with bit of English and Indian! If I can help I will, how do I go about getting tested? I will republish on my Facebook page so all my family can see.
    Suzie Miles
    Ps. I have registered just now to receive a cheek swab kit! I have also forwarded article on Facebook to my family and asked them to share it. Let me know if anything more I can do to help. Wishing you all the best xx

  14. Hi my ethnicity is british/Portuguese . My heritage goes back to India, a place called Goa. I may not be able to give you my stem cells as I recently had a stroke and take a series of medication now. But I have siblings that might be able to help you? I intend to share your post so that as many people that read this post might be able to help? I hope you get a donor and we will pray for your good fortune. Kind regards Lawrencio Fernandez

  15. Sorry to be a deafitist but The Royal Marsden have access to the Anthony Nolan Trust donors data bank and will know if they have a donor on that list who is a 100% match. They told our family that they wouldnt test anybody because the chance of a match is negligible. My granddaughter has just had this same operation at 3 years old and they wouldnt test her brothers or sister as the chance of a match was less than 1%. Hope you find the match with the help of The Royal Marsden hospital. For donors just go to your GP and have your details entered on the data bank.

  16. I would urge anybody irrespecive of ethnic origin reading this to go to their GP for tests but must emphasise it doesnt happen in a few minutes have a test and donate, it takes time.

  17. Hi there,
    My name is Adam de Silver. I am of Anglo-Burmese and Irish decent. Also as you can see my name is of Portugese Origin. I have just signed up to the Anthony Nolan Blood Cancer Charity and Bone Marrow Register. I am 30 years old and weirdly enough live in Brighton (i heard your appeal on Juice Fm today). Please feel free to check out my Facebook and contact me.
    All the best Adam.

  18. Hi,

    I’m White/Asian with Portugese heritage so have signed up to see if I might be a match for you and will pass this on to my family as well. All the best in your search for a donor.

    Matt.

  19. Hi I live in nearby Shoreham and 2 weeks ago I donated bone marrow through bone marrow harvest. If I can be of help explaining to others my experience (which I might add was all good) then please get in touch.

  20. Hi, I’m Irish, living in Dublin and willing to be tested and help in any way. Let me know if I can do anything.

  21. Hi there, i want to register as a donar and get tested, however i cant figure out how to do so from ireland? I tried the websites listed above however they are for the uk? I know my blood type is O negative. Whatever i can do let me know!

  22. Hi, I am Anglo-Indian with Portuguese mixed in. My mothers maiden name was Rodrigues. Happy to go on list for you. Which one would you prefer me to register with? I am 40 years old. Please contact me via my email address.

    • Hello. If you live in the UK, you can register with Delete Blood Cancer UK (www.deletebloodcancer.org.uk). You will need to register online, and then they will send you a swab kit to your home which contains two cotton bud like swabs which need to be rubbed on the inside of your cheek. You then send them back and that’s it, you’re registered. Thank you.

  23. Hi Nikki
    Just to let you know I am half Irish, half Burmese and have just registered with ‘Delete blood cancer’. I hope I can help you.
    Theela

  24. Hi

    I am o neg and am on the stem cell register. My grandfather was a DeSouza from India and my Grandmother is a Burmese desendant. My mother is the result of both of those and then me (English Father). No Irish but deffinately a DeSouza.

    I hope I can help you… Good luck

    Belinda

  25. Hi, I from Myanmar ( South East Asia). My father side from india and my mother side from Armenia. So, can I help you? How can I do. Please reply me.

  26. Hi, Nikki!
    I’m half southeast Asian, already registered with the DKMS in Germany… will this suffice or is there anything else I need to do? I’m not sure how these things work internationally…

    • Hi Sam, I believe the organisations are able to search internationally for donors, so hopefully that will suffice, many thanks.

  27. Hi Nikki,
    I would like to see if I may be a match. I’m Anglo-Indian, my father was a mix of Portaguese, French & Indian & my mum is Irish. I also know someone that has Burmese mix that could be interested.
    Please feel free to contact me via e-mail if you think I may be of any assistance.
    I dont think I’m registered with the Irish registry, perhaps the UK one though.
    Sincerely,
    R

    • Hi Robyn, we’re struggling to keep on top of all the comments, but to find out whether you can help or not you’d need to register as a donor. In the UK they are Anthony Nolan (www.anthonynolan.org) or Delete Blood Cancer UK (www.deletebloodcancer.org.uk) and the Irish one is here: http://www.giveblood.ie/bonemarrow. Once you’ve filled in the online form, they will send you a testing kit in the post, and that’s when we’ll find out if you are a match. I hope you can help, and thanks.

    • Hi Wenna, thanks very much. Are you able to register as a donor? It’s Anthony Nolan (www.anthonynolan.org) or Delete Blood Cancer UK (www.deletebloodcancer.org.uk). You just need to fill in one of the forms and they will send you a testing kit in the post. Much appreciated!

  28. I would love to help, I will discuss this email with my family doctor and if there is the slightest chance I could help then I would without question, also my daughter travels a lot as she works for a large cruise ship company and meets lots of people , I will speak to her raise her awareness and you never no she co u LD meet that perfect 10. I think this is an amazing appeal and I am confident the right match will be found . i will let you no what my doctor says , best wishes xxxx

  29. Hi Nikki, I have the right ethnic background but live in France so cannot join the organisations you have mentioned. I am British, 49years and originally from near Brighton, so really feel a connection. I would live to help, but how can i be tested??

    • Thank you Michelle, if you are in good health you can register and will
      Be contacted if you are the best match. Many thanks. Geoff

  30. Hi,
    I am Irish and have blood type B – Currently I am living in Melbourne.

    My husband Eoin is Irish with Portuguese (Mendez) heritage and also living in Melbourne.

    We would be delighted to help.

    Sinead

  31. hello friends, am Tenywa Allan from Uganda. i do women empowenment projects under pat the child a local NGO. hear, i do set up projects to help widows and poor families especially in deep villages of Uganda. Who can join me. or, who needs help. please, join me for updates.

  32. I am Anglo burmese. Fathers mother was half irish and my grandmother is burmese.
    Not sure what my blood type is but contact me if you need anything further? X

  33. Hi
    My name is Kathrine. I am of Burmese Irish decent my Grand mother was also of Portuguese decent.
    My blood type is O+ and I am on the Perth, Western Australian Bone marrow registry.
    Please let me know if I can help.
    Thanks

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