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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:
Briallen · 13/04/2023 21:29

I’m already on the register. Massively hoping she finds a match soon

WonderWoop · 13/04/2023 22:13

@Rosieted thanks for flagging re she limit change. They really should advertise this somehow. If I hadn't read your post I would have dismissed it as I couldn't previously register due to age. Anyway, will order a swab kit now. Best of luck to your cousins little girl

reddwarfgeek · 13/04/2023 22:28

Registered x

GrannyAchingsShepherdsHut · 13/04/2023 23:09

Just bumping.

I've had an email back that I can register with the health condition I've got, so I'm now waiting for a kit.

T1Dmama · 14/04/2023 00:03

Mine also came today. Got a bit of a cold atm though so may wait a few days

RandomMess · 14/04/2023 12:26

.

LittleMG · 15/04/2023 22:03

I’ve done mine and they are on their way to the lab I’ve received confirmation!

RandomMess · 15/04/2023 22:45

.

AlmostAJillSandwich · 15/04/2023 22:49

Is this the same register as anthony nolan?

RandomMess · 15/04/2023 23:46

@AlmostAJillSandwich no it isn't

Lysianthus · 15/04/2023 23:54

@Rosieted I'm so sorry that I'm too old, but am sending you very best wishes and hopefully keeping this thread alive Flowers

AspectArea · 16/04/2023 00:00

I've just registered.. will return my swab pack as soon as it arrives

BrightBlueHue · 16/04/2023 00:11

I’m so sorry 😞

Wish I could donate but I have Crohn’s disease and have to take biological medication so don’t think I can?

Hope you get a positive outcome 🤞

Rollerboots · 16/04/2023 00:19

I’ve been on the DKMS register for 8 years. Had pretty much forgotten about it, but I got a call to say I was a match. I was one of three possibilities, after some more blood tests I wasn’t the best match, so another donor got to donate instead. Sad I couldn’t help, but happy another was a good match .
My sons 10 year old friend is recovering from Aplastic Anaemia, after initially not having a match available, they were able to find one . He is doing great. Wishing your god daughter a similar outcome.

IHateLegDay · 16/04/2023 00:31

I really hope she finds a match asap and gets the treatment she needs!

I tried to sign up a few years ago as a friend of mine has leukaemia but unfortunately wasn't allowed due to having a latex allergy and being on certain medications.

Eranzer · 16/04/2023 00:42

Registered and awaiting swab kit. X

BloomForever · 16/04/2023 02:16

Posted mine today. Hope it doesn't effect the swabs because it won't be collected til monday.

BloomForever · 16/04/2023 02:28

@IHateLegDay I didn't see latex allergy in the donors guide?! I sent my swab today. I'm not massively allergic, plasters itch and cause redness around the site. I can cope with my allergy as it's obviously much milder than yours.
Do you think this will affect anything if I get a match? I will obviously put up with these little reactions to help someone ❤

IHateLegDay · 16/04/2023 12:17

BloomForever · 16/04/2023 02:28

@IHateLegDay I didn't see latex allergy in the donors guide?! I sent my swab today. I'm not massively allergic, plasters itch and cause redness around the site. I can cope with my allergy as it's obviously much milder than yours.
Do you think this will affect anything if I get a match? I will obviously put up with these little reactions to help someone ❤

I applied with Anthony Nolan years ago and also to be a blood donor and it came up but I couldn't see it on another register I looked at last night but am still unable to join the list due to other factors.

If you get accepted, send them an email and ask if it's a problem xx

Sneakyblinders · 20/04/2023 22:34

Posted my kit back today and bumping.

SixPurpleChairs · 20/04/2023 22:37

Also bumping

Georgeandzippyzoo · 21/04/2023 00:07

thismeansnothing · 02/04/2023 11:53

I've registered.

I thought having had a blood transfusion I wouldn't be eligible (like blood donation which I used to do regularly) but apparently this isnt the case.

That's a great point, glad youve posted because I'm sure a lot of people may have thought the same x

RandomMess · 21/04/2023 10:47

.

JoJo10 · 21/04/2023 14:22

Can I ask anyone how long your pack took to arrive? I registered on the 3rd but not had anything yet.

GrannyAchingsShepherdsHut · 21/04/2023 19:20

I registered on the 13th and it came yesterday.