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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:
CatMattress · 04/04/2023 09:39

I'm prohibited from donating, but wishing you every luck in finding someone

Amabitnewhere · 04/04/2023 10:17

Sadly I have a chronic condition that precludes me from joining the register, I’d have done it otherwise.

For those of you that might still have babies, blood cord stem cells can be kept for 25 years, I did that for my 2 and it does provide some peace of mind and could save their lives.

Cattenberg · 04/04/2023 11:08

ShergarAgain · 03/04/2023 19:58

I hope she finds a match and does brilliantly.

Plea here as a doctor involved in this field to everyone applying for kits to PLEASE persuade your husbands and brothers and any adult sons to apply. Men make much better stem cell donors than women (larger & they don’t have HLA antibodies that women make in pregnancy which can cause problems for stem cell transplants). The bone marrow registers are all very female heavy and it’s not good news for getting the best matches for patients. Round up your menfolk please!

I think this post is definitely worth repeating. I’m not a doctor, but it’s my understanding that the ideal donor is a healthy young man aged between 16 and 30. Maybe it would be worth posting an appeal on a forum aimed at men, such as Pistonheads?

I’ll ask my BIL if he’d consider joining. He’s already over 35 though, so is less likely to be chosen to donate than a younger man. DSis and I are already on the register.

I’ve just made a donation to Anthony Nolan to help them reach more potential donors. I’m far from being the ideal donor, so that’s probably the best way I can help.

givemushypeasachance · 04/04/2023 11:18

I've been registered since 2017, never been a match for anyone. I'll make do with donating blood in the meantime!

Original poster
Rosieted · 04/04/2023 13:15

Thank you all so so much. I thought I would add that the upper age limit has changed recently to 55 so people who may have previously told they were ineligible might now be eligible. Thank you again.

OP posts:
NoodleDoodleDo · 04/04/2023 13:30

I have checked before but in light of your post have checked again and I don't meet the criteria unfortunately. Nor does my DH.

Thought I would reply to help keep this in active for you.

Hoping your god daughter finds a match

TheWorldisGoingMad · 04/04/2023 13:41

I've been on the register for at least 20 years, although I've never been called up.

As far as I can remember, the test is just a cheek swab and you send it off, that's it. It's definitely worth registering.

I hope you find a match. x

LeukaeLucky · 05/04/2023 05:51

I hope you find a match. I received a bone marrow transplant in 2019 that saved my life

LeukaeLucky · 05/04/2023 05:55

Re: age limit there are several registries and all have different age requirements. Check Anthony Nolan / DKMS / BBMR

Ukrainebaby23 · 09/04/2023 07:39

Does MN let you edit the front post,? might be worth adding the age update it if you can.

Shutthefridgedoor · 09/04/2023 08:19

registered op x

CoffeeLover90 · 09/04/2023 09:27

Already registered. Commenting to bump Smile ask your male relatives to register, PP says they're more likely to match

Frazzledstudentmom · 09/04/2023 09:27

I can't imagine the heartache you are all suffering right now.
Just signed up. I hope, with the raised awareness, a donor is found soon.

MoreSleepPleasee · 09/04/2023 10:17

Just signed up.

chaztree · 09/04/2023 14:47

I've been on the list for about 5 years. I hope you find a donor.

Tomasinabombadil · 09/04/2023 16:03

I’m too old to donate now but was on the Donor Register for over 30 years. I was called only once during those years to have further bloods taken (at my local GP surgery) for more extensive testing because I may have possibly been a match for someone in need. Sadly I was not a suitable match.
Really, really hope your relative finds a donor soon.

Hardbackwriter · 09/04/2023 17:08

My swab arrived yesterday and it's very, very easy to do - just a further bit of encouragement for those thinking about it!

RandomMess · 09/04/2023 19:39

.

RandomMess · 10/04/2023 12:47

.

OhForCodsHake · 10/04/2023 12:53

Just registered. Fingers crossed x

Justme10 · 12/04/2023 07:30

I have done my swaps and put them in the post this morning.
Hopefully give this thread another bump.

Original poster
Rosieted · 13/04/2023 21:00

Thank you so much. It's amazing to hear about swabs being ordered and posted back!

OP posts:
CoffeeLover90 · 13/04/2023 21:20

Mine only come today, posting tomorrow. Fingers crossed!

Smithlets80 · 13/04/2023 21:25

My swab pack has arrived today so will be sending it back tomorrow.