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AIBU?

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Original poster

Every parent's worst nightmare - please help

383 replies

Rosieted · 02/04/2023 11:36

Twelve weeks ago my cousin's daughter was a healthy and happy 10 year old, enjoying a sleepover for her birthday and dancing with her friends way past her bedtime. Then all of a sudden, just after Christmas, her parents noticed strange bruising on her body. They didn't think it was anything serious but took her to her GP who ran her bloods. When the results came back everyone was in shock - they showed that her bone marrow had suddenly stopped working and after various tests she was diagnosed with a very rare and incredibly serious blood condition called aplastic anemia.

She is now in hospital having regular transfusions of red blood cells and platelets which are keeping her alive. In order to be cured she needs a stem cell transplant, and fast.

Her brother sadly isn't a match. Nor is anyone currently on the stem cell donor registry. My beautiful relative is now very poorly in hospital and is reliant on a total stranger to do something amazing and donate some of their stem cells to save her life.

I had no idea, but 90% of stem cell donations are taken from a donor's blood in much the same way as giving blood - it's pretty simple, yet it could save someone's life.

If you are reading this, please could you consider joining the donor stem cell registry. You could be the match that my god daughter needs. A group of her friends have set up a campaign called #swabyourgob and you can sign up to join the registry by ordering your free mouth swab kit from www.dkms.org.uk/swabyourgob

Even if you are not a match for her, you could be for the many people each year who need the kindness of a total stranger to save their lives.

Thank you so much for reading x

Register as a potential donor

To become a potential blood stem cell donor, just check your eligibility and request a swab kit.

http://www.dkms.org.uk/swabyourgob

OP posts:
Chatterbuginabox · 03/04/2023 20:10

Ive signed up

i will return my swab as quickly as possible. I do hope a match is found swiftly - mumsnetters are on the case!

321user123 · 03/04/2023 20:10

Gosh.. I hope a donor is found soon OP 😓

I always wanted to donate since I was a teenager but unfortunately not eligible as I have T1 diabetes ☹️.

Snapfel · 03/04/2023 20:13

Just signed up.
Thank you for sharing this.
Hope your god daughter finds a match very soon.

ChocoChocoLatte · 03/04/2023 20:18

I'm so sorry to her this and am afraid I can't sign up due to being a cancer patient. I have however been the recipient of 18 blood transfusions, which saved my life twice, and have everyone I know donating and signing up. I wish only luck and good things for you all.

Unicorntastic · 03/04/2023 20:30

I’ve also just registered.

FlamingoQueen · 03/04/2023 20:35

I’ve had cancer so unable to donate (I checked), but wishing you success in finding someone x

artimesiasfootsteps · 03/04/2023 20:35

Just registered, crossing fingers for your goddaughter 🤞

Cocoda · 03/04/2023 20:36

Praying that your cousin's daughter soon finds a match 🙏
I am concerned that there seems to be quite a number of people who have registered but never been called for testing.
It may be worth contacting the stem cell service to query this? ❤

nothingcomestonothing · 03/04/2023 20:49

I am concerned that there seems to be quite a number of people who have registered but never been called for testing.
It may be worth contacting the stem cell service to query this? ❤

Stem cell transplant isn't done if it can be avoided, it is a serious procedure, so it's not like millions of donors are called up. Plus sometimes transplant will be done with umbilical cord blood, or a patient's sibling will be found to be a good match, so an unrelated donor isn't needed. Never being called to donate doesn't mean people are being missed, I'm not an expert by any means but from what I understand it's a very well run, European/ world wide system. If an unrelated donor is the best match they will be called - they don't need more tests beyond the initial swab, that gives all the info needed to determine a match. The transplant recipients I've known sometimes have excellent matches with 2 or 3 people on the register, so you'd not know if you were one of those 2 or 3, only if you were the first choice. If someone has registered and is the best match, I'm fully confident they will be contacted.

Sandals12 · 03/04/2023 20:51

Signed up there now. Anyone ever been called up?

Shona52 · 03/04/2023 20:55

I’m so sorry to hear your heartbreaking news. I wish you and your family all the luck in finding a cure. I’ve just registered for a pack again I had no idea it would be so easy to do and will definitely spread the word for you. Let’s hope we find the answer for you xx

Marisquita · 03/04/2023 20:59

I’ve just signed up (surprised to be allowed at age 54) but pleased to be able to. A friend of mine donated stem cells to her mother and gave her 10 precious years of grandmotherhood she wouldn’t otherwise have had.

RhubarbCrumble12345 · 03/04/2023 21:00

I have just registered too. Fingers crossed you find a match xxx

EatingPeanutButterWithASpoon · 03/04/2023 21:01

So so awful. I've just registered 💞

Marisquita · 03/04/2023 21:02

Marisquita · 03/04/2023 20:59

I’ve just signed up (surprised to be allowed at age 54) but pleased to be able to. A friend of mine donated stem cells to her mother and gave her 10 precious years of grandmotherhood she wouldn’t otherwise have had.

Oh I see I’ve just squeezed in, as the age limit for registration is 55. They keep you on the register until your 61st birthday.

Sevensilverrings · 03/04/2023 21:04

Just registered. Surprised they let me!
i hope things work out xx

vaccinistatotebagchicbarista · 03/04/2023 21:09

I am so sorry your family are going through this. I joined the registry a few weeks ago and stories like this remind me why❤️

UndertheCedartree · 03/04/2023 21:10

I wasn't able to register but I wish your family member well and hope a match is found soon 💐

Sarels · 03/04/2023 21:14

I have registered really hope a match is found for her 🤞

Thisisallafiction · 03/04/2023 21:16

nothingcomestonothing · 03/04/2023 20:49

I am concerned that there seems to be quite a number of people who have registered but never been called for testing.
It may be worth contacting the stem cell service to query this? ❤

Stem cell transplant isn't done if it can be avoided, it is a serious procedure, so it's not like millions of donors are called up. Plus sometimes transplant will be done with umbilical cord blood, or a patient's sibling will be found to be a good match, so an unrelated donor isn't needed. Never being called to donate doesn't mean people are being missed, I'm not an expert by any means but from what I understand it's a very well run, European/ world wide system. If an unrelated donor is the best match they will be called - they don't need more tests beyond the initial swab, that gives all the info needed to determine a match. The transplant recipients I've known sometimes have excellent matches with 2 or 3 people on the register, so you'd not know if you were one of those 2 or 3, only if you were the first choice. If someone has registered and is the best match, I'm fully confident they will be contacted.

I was going to ask if this was anything to do with umbilical cord donation. I remember agreeing to this but couldn’t remember exactly what it was for… I’ve signed up now, and have shared the link.
do sorry your family are going through this, OP X

MrsMrsD · 03/04/2023 21:17

I registered a few years ago but have never been called up. I'm praying a match is found for your god daughter x

thatsn0tmyname · 03/04/2023 21:24

I'm too old to be a viable donor (49) but came to wish you all the luck with your search.

Edda09 · 03/04/2023 21:35

I didn’t know about this and have signed up now. I’ve shared the link on SM too. Hope you get a match! 💐

AuraBora · 03/04/2023 21:40

How awful for you all, my wonderful niece is 10 and its just terrible to imagine being in the situation. I've just signed up for the swab pack. Thank you for sharing. I'm surprised this isn't more widely known about...
Really hope things turn out well for your family

ClubTropicanaVIP · 03/04/2023 21:50

Just signed up for the swab kit…..I hope your goddaughter finds a match 💐

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