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clairelovestlc
05-10-06, 17:05
My cousin Paige is only 10 years old and has Glanzmann's Thrombasthenia, she’s had it all her life, I’m a carrier as is her mum and her 2 brothers.

It’s s a rare congenital disorder of blood platelets, which causes clotting factors to not work, if she cuts herself she doesn’t stop bleeding, she also has a very weak immune system, and bruises very easily, as a baby just picking her up would bruise her, now even holding her hand, or sitting on a solid chair will bruise her. She spends half her life being rushed into Great Ormond St for blood transfusions etc.

She’s just gone into hospital for a bone marrow transplant and chemo therapy, without it she will die, and it only has a 40% chance of working.

I have always been very close with her, shes like a sister to me.

She will be in isolation at least up to xmas, and will be in hospital for up to a year.

Today is the 1st time I’ve spoken to her since she went in( via phone) and I must say I’m amazed, she’s in isolation for up to 6 months away from her friends and her family in a boring room with no toys, being pumped with drugs and she’s sounding as bright as a button!

I just thought id post this as I’ve been having a few problems recently and feeling sorry for myself, but speaking to her has made me realise how lucky I really am, this little girl has been through so much, yet the first thing she said when I called her was " hi Claire, how’s uni? How’s your boyfriend?" "My rooms so big, and I got this really cool painting on my wall" all she does is care about other people and see the positives in life, most people would be moaning that they are in pain and bored and lonely, but she hasn’t complained once!!! Shes probably feeling very sick from the chemo, and is going to loose all her hair, but still keeps a smile on her face.

she knows she might die, but her main concern is " if it works, ill be better and it will make my mums life easier as she wont have to keep taking me to hospital" She cant wait to get home and get back to school, have her ears pierced and see her friends.

We should all take a leaf out of her book and start to enjoy life and live it to the full

This is a picture of her and me taken in the summer
http://img316.imageshack.us/img316/3442/claireyandpaigecopyhc8.jpg (http://imageshack.us)

Sofitegan
05-10-06, 17:08
im sorry to hear about this. :( But i also agree. :) Whats the point in living if you aren't, well, really living it?

Janny
05-10-06, 17:11
I really admire her for havin such a positie atitude about it all. I sincerely hope she'll turn out ok, give her our best wishes!

jarhead
05-10-06, 17:11
Sorry to hear about that Claire, but she's a strong little character and well your right. reading those lines made me feel lucky too, and how unlucky she must be, but wish her the best of luck, I hope it works :hug:


PS. she looks so beautiful and extremly like you, tell her shes got a great smilie, I'm sure I'm not the only one who thinks this

scion05
05-10-06, 17:14
Oh No :(
She sounds like such a lovely girl :hug:
I hope she makes it :) im sure she will :D

tampi
05-10-06, 17:22
Usually, people that has big difficulties are more positive than those that have it all easy one.
What is a great illness for us, for her is hers life ;) :)

Legends
05-10-06, 17:25
I am so sorry to hear about this! :( :( You know, I had a girlfriend who used to cut herself so I know how awful that part is. I wanted her to stop doing it, but it was too hard for her. So I decided to cut myself just too see what she would do then, but I ended up in the hospital. Anyway that made her stop doing it. I don't know if this mean anything, but anyway...

Greenkey2
05-10-06, 17:44
It's very difficult for everyone when a family member is seriously ill; but she is proving that life is worth fighting for :tmb: A huge hug to you all and best wishes to the future Claire. All the best :hug: :wve:

Sofitegan
05-10-06, 19:04
Good luck to you and family. :)

Alive_and_Funky
05-10-06, 19:11
I don't know if I'd be as positive if I was in the same situation as your cousin's. It's incredible to think that she reacts like a normal person through what she is going through. I hope Paige gets better, Claire. :hug:

Captain Mazda
05-10-06, 19:15
I wish the best for your cousin and your family. You'll be amazed to see how positive outlooks can get people through something as terrible as cancer. She's tough, no doubt about it. I've got a distant relative in chemo right now and as much as she tries to remain cheerful, you can just tell the weight she carries in her voice.

Laras Backpack
05-10-06, 19:17
She sounds like an amazing girl and you're very lucky to have her in your life. I really hope she pulls through. :hug:

Gabi
05-10-06, 19:42
She is one brave, little girl!
I wish her all the best and hope that she will get better.

clairelovestlc
06-10-06, 09:53
Thank you all for your kind messages :)

Dazzy
06-10-06, 10:00
My cousin Paige is only 10 years old and has Glanzmann's Thrombasthenia, shes had it all her life, Im a carrier as is her mum and her 2 brothers.

Its s a rare congenital disorder of blood platelets, which causes clotting factors to not work, if she cuts herself she doesnt stop bleeding, she also has a very weak immune system, and bruises very easily, as a baby just picking her up would bruise her, now even holding her hand, or sitting on a solid chair will bruise her. She spends half her life being rushed into Great Ormond St for blood transfusions etc.

Shes just gone into hospital for a bone marrow transplant and chemo therapy, without it she will die, and it only has a 40% chance of working.

I have always been very close with her, shes like a sister to me.

She will be in isolation at least up to xmas, and will be in hospital for up to a year.

Today is the 1st time Ive spoken to her since she went in( via phone) and I must say Im amazed, shes in isolation for up to 6 months away from her friends and her family in a boring room with no toys, being pumped with drugs and shes sounding as bright as a button!

I just thought id post this as Ive been having a few problems recently and feeling sorry for myself, but speaking to her has made me realise how lucky I really am, this little girl has been through so much, yet the first thing she said when I called her was " hi Claire, hows uni? Hows your boyfriend?" "My rooms so big, and I got this really cool painting on my wall" all she does is care about other people and see the positives in life, most people would be moaning that they are in pain and bored and lonely, but she hasnt complained once!!! Shes probably feeling very sick from the chemo, and is going to loose all her hair, but still keeps a smile on her face.

she knows she might die, but her main concern is " if it works, ill be better and it will make my mums life easier as she wont have to keep taking me to hospital" She cant wait to get home and get back to school, have her ears pierced and see her friends.

We should all take a leaf out of her book and start to enjoy life and live it to the full

This is a picture of her and me taken in the summer
http://img316.imageshack.us/img316/3442/claireyandpaigecopyhc8.jpg (http://imageshack.us)

That is a very good post there, and my thoughts are with Paige, hope she pulls through.

badboy70
06-10-06, 10:39
aww,i'm sorry to hear that:( :hug:

clairelovestlc
06-10-06, 11:00
The rest of my family knew it was coming for quite a hile but hid it from me as they thought it best i didnt know, they also prevented me from being the bone marrow doner... i have recently majourly fallen out with my parents so they cant stop me helping out now... i have volinteered to look after paiges younger brother while shes in hospital ( becasue her mum will be there with her) so i may be becoming a surrogate mother to a 5 year old ( very worrying!)

Autolycus
06-10-06, 11:30
She sounds like a very brave little girl, i hope everything goes well and she makes a quick recovery so she can get back home to her loving friends and family.

clairelovestlc
06-10-06, 12:41
i have painted this for her, i am going to laminate it so it can be disinfected and taken into the hospital :)

( my scanners busted so i had to take a picture with my digital camera!)
http://img247.imageshack.us/img247/4774/forpaigekm2.jpg (http://imageshack.us)

jarhead
06-10-06, 12:43
aww thats brilliant, and such a nice thing to do, and with offering to look after her brother :tmb:

tampi
06-10-06, 13:37
i have painted this for her, i am going to laminate it so it can be disinfected and taken into the hospital :)

( my scanners busted so i had to take a picture with my digital camera!)
http://img247.imageshack.us/img247/4774/forpaigekm2.jpg (http://imageshack.us)
It is a precious drawing, very sweet, note that is done with the heart :)
It will like much, it gives to much peace and note that you want much her
Is very beautiful...very beautiful

Dazzy
06-10-06, 13:53
i have painted this for her, i am going to laminate it so it can be disinfected and taken into the hospital :)

( my scanners busted so i had to take a picture with my digital camera!)
http://img247.imageshack.us/img247/4774/forpaigekm2.jpg (http://imageshack.us)

You are one talented girl, nice painting.

Titanium
06-10-06, 16:11
Claire that is brilliant :tmb:

Im sure Paige will absolutely love that, and I hope she will have a speedy recovery! :)

xMiSsCrOfTx
06-10-06, 16:20
She sounds like a fighter. :) I'm sure she'll love that guardian angel too. I hope she recovers quickly.

RAID
06-10-06, 16:26
Our prayers are with her :)

ILG49ers
06-10-06, 18:36
She's sounds like a really brave girl! My prayers are with her and all of the family! :hug: