ok I can breath again

[Stitchahula]

Well we got some good news today at the doctors. First off my son William is doing great (some of you might remember my sister payroll princess writing about him). He's 4 y/o and has Diamond Blackfan Anemia which is when the body for some reason doesn't make it's own red blood cells. He had been transfusion dependent then went into remission and he came out of it for 1 transfusion earlier this year. When we saw the doctor today he told me we didn't need to go back for 3 whole months. I'm so happy he handled himself so well today he didn't even need to sit on my lap when they drew the blood. He's growing up so quick. I also have a baby that's only 2 1/2 months and we just found out that he doesn't have the mutated gene.:thumbsup: We had his blood drawn right before we went to Disney at the end of August so I've been holding my breath since then. Right before we left they found out what gene it is of william's that is effected. My husband and I both had our DNA tested too and found out that William is a spontanious mutation. I just wanted to thank everyone again for all the pixie dust for him it sent him into remission again !!:yay::joy:

[2Epcot]

Glad to hear things are better for you son Coreen, and hope that it continues. :pixie:

[RedSoxFan]

This is great news. More pixie dust that he stays in remission.:)

[Beast_fanatic]

Great news! :thumbsup:

[vizsla]

That's great news. Hope everything continues to go well.

[ChipnDaleGal]

I am glad that you got such good news for both of your boys! I hope that William remains in remission. Continued good luck wishes for that! :pixie:

[Hayden's Dad]

That is wonderful news I am so happy for you, but just in case here is a little more pixie dust :pixie: You can never have to much

[MsMin]

Great news, just sending more :pixie: for continued good health.

[crazypoohbear]

William is a spontanious mutation.

Hey, I take exception to you calling my nephew a spontanious mutation!:D
He's Willyum!:)
That's great news!~ and good news for Justin also!~:mickey:
By the Way Happy 40th birthday!
See you this weekend

[ElenitaB]

William is a spontanious mutation.
Just goes to show what a special kid he is! :thumbsup:

Here's more :pixie: for continued good health.

[disneydeb]

Thank you for sharing the good news!:thumbsup:

[Magic Smiles]

My step daughters best friends 4 year old daughter also has Diamond Blackfan Anemia. She is on medication / injections (not sure which) every two days and is currently doing well. They have just booked a Disney Cruise for Jan 08.

[conorsmom2000]

That is wonderful news! More :pixie::pixie::pixie: for continued good news and health for William!!!

[crazypoohbear]

My step daughters best friends 4 year old daughter also has Diamond Blackfan Anemia. She is on medication / injections (not sure which) every two days and is currently doing well. They have just booked a Disney Cruise for Jan 08.

She may be getting steroids injected. The only two "treatments" for DBA is steroids or transfusions at this point.
I hope she continues to do well. Keep us posted.
I don't know how far away she is from Maine but every other year there is a a Camp sunshine that has a week for families with kids with DBA only. Coreen has gone there with William and she found it to be very helpful and supportive. William just loved being at camp!
The camp is at Sebago Lake in Maine and each week they have a different camp for different illnesses.

When William was first diagnosed my mother in law kept saying she thought a girl my husband grew up with at Hampton beach had two kids with the same thing. I thought she was mistaken because it's kinda rare but... It was true. Coreen met her at camp last year.
What a small world

[Magic Smiles]

I don't know how far away she is from Maine but every other year there is a a Camp sunshine that has a week for families with kids with DBA only. Coreen has gone there with William and she found it to be very helpful and supportive. William just loved being at camp!
The camp is at Sebago Lake in Maine and each week they have a different camp for different illnesses.


She lives in Ottawa, Ontario, Canada which isn't that far away from Maine. I don't know if the camp is open to Canadians or not, but I will definitely pass the information on to her.
I know that they had a long rough time at the start, but her condition seems to be controlled at the moment, which of course is why they are able to take the cruise. She has an older sister who is fine and I am sure is so excited about a Disney Cruise.
Thanks for the info. :mickey:

[PAYROLL PRINCESS]

The last time I checked, there were less than 1000 people world wide that have this disease. But the more you talk to people about it, the more you find someone who knows someone who has it. Hopefully it's something that will soon be a thing of the past as they get more funding to do research. The groups working on this have made great strides especially just in the last year. Here's hoping that they keep up the quick work.
William is truly a special little boy. With what he has been through, he's still a very happy go lucky little boy. It hasn't made him bitter or introverted at all.
Magic Smiles-I hope your friend's little girl continues to do well also.
One key sign that the person who has this is not doing well is that they get extremely pale and their energy level drops drastically. It really takes a lot out of the person who has it.

[Stitchahula]

Camp Sunshine is open to all families with children with life threatening illnesses no matter where they live. It's a camp for the whole family not just the child. The next DBA week will be in 2008. They are incredible there you get to meet the dr.s doing the research and find out what kinds of progress they are making. I think the best part is the support though, because up there you aren't "the one with the sick kid " cause everyone else is in the same boat. It's always nice to know you aren't alone. If you friend wants to talk let me know and I'll give you my email. Lots of pixie dust for her little girl.

Thank you everyone for the well wishes and pixie dust

[Jeff]

Great news!:thumbsup:

[Magic Smiles]

Camp Sunshine is open to all families with children with life threatening illnesses no matter where they live. It's a camp for the whole family not just the child. The next DBA week will be in 2008. They are incredible there you get to meet the dr.s doing the research and find out what kinds of progress they are making. I think the best part is the support though, because up there you aren't "the one with the sick kid " cause everyone else is in the same boat. It's always nice to know you aren't alone. If you friend wants to talk let me know and I'll give you my email. Lots of pixie dust for her little girl.


Was just talking to my step daughter and it turns out that her friend and the family did go to Camp Sunshine last summer. My step daughter is going to ask Paula if she did meet up with your family. It really is such a small world. If you could send me your email, I will forward it on to Paula.
Thank you so much :mickey: