Did you get your pancakes?

...Mini spreading the word via facebook that she will be on the news

 Random images...I didn't get the chance to take photos during the interview...

 ...Mini in the stripes, taking shots of the news lady filming her segment.

 ...they sent a car for us...yep...Beyonce style...Mini made it to school on time...Man, do you know how much I could get done if I had a driver everyday?  I'm just putting it out there.

You can watch the video here...

...It was a great way to start the morning...but, the reason for the day is never far from my mind...

Mini was blessed with the perfect donor...not everyone is so lucky...just read the letter we received just yesterday from the mother of a 10 year old girl who suffers from Sickle Cell Disease...

I appreciate your getting back to me.  It's my 10 year old daughter who is suffering from Sickle Cell...we're trying to find a bone marrow donor for her.  I would love to keep in touch with you & get to know you.

I think it would be a tremendous help mentally for my daughter (Kelsie) to know that you have suffered through the same thing...but that you have now been cured.  It will give her real hope.  Your story is a tremendous help to me as well.  Through you...we can now see a brighter future & know that this horrible disease & all of the suffering is going to end one day very soon...as soon as a match becomes available.

My faith is stronger...thanks to God...and YOUR story.  Thanks for sharing your story with the world.  I KNOW a match will be found very very soon!

Kelsie actually asked if she could meet you & I told her I wasn't really sure.  If it's okay with your mom...I'll keep in touch...and maybe one day in the future...you, your mom, me & Kelsie can meet.  

Kelsie is so happy for you too...and even without ever meeting her, you've already done something tremendously wonderful for her. You've given Kelsie hope, and that's something you cannot put a price on!

  

Thank you so much for that. Thanks for sharing your story with the world...and thanks for being gracious enough to respond when hearing of another child in need.  Please show your mom this message & keep her updated on our correspondence.  Your  mom can feel free to call me 

Again...thanks for everything.

Thank you

Click here to learn more about becoming a bone marrow donor...

7 months past transplant and counting

Chemo is a big part of transplant therapy.  It does a lot of harsh things to your body...one of the most visible side effects of chemo is the loss of your hair...This can be a huge blow to your self-esteem...especially when your a girl like Mini.  I just wanted to post this picture for all the kids who will go through this treatment and are worrying about how long it will take their hair to grow back.  This is Mini's hair growth...7 months past fall out.  Just seven months ago she was just as bald as her profile pic...and look at her now.  So, be brave...your hair will return.   Mini  is saving her pennies, she wants braid extensions before returning to school in September (high school...sigh-yeah).

Barriers to bone marrow transplantation for sickle cell anemia.

While allogeneic marrow transplantation is curative therapy for patients with sickle cell anemia, only a small fraction of patients in the United States receive this treatment. We surveyed participants in our multicenter study of marrow transplantation for sickle cell anemia to determine reasons for not proceeding to transplantation. Among the 4848 patients less than 16 years of age with sickle cell anemia that were followed in 22 collaborating centers, 315 (6.5%) patients were reported to meet protocol entry criteria for transplantation, although there was wide variation among the institutions (0.9-36%). Among the 315 patients eligible for transplantation, 128 (41%) had human leukocyte antigen (HLA) typing performed, and of these 44 (14% of those meeting entry criteria) had an HLA-identical sibling. Common reasons for not proceeding with HLA typing in the remaining 187 patients included lack of a candidate sibling donor (76 patients, 24% of those meeting criteria) and lack of financial or psychosocial support (33, 10.5%). Parental refusal (30, 9.5%), physician refusal (13, 4%), history of medical noncompliance (2, < 1%), and other reasons (33, 10.5%) were less frequently cited. To date, 25 patients have been transplanted. Of the remaining 19 patients with HLA-matched donors, seven did not proceed to transplantation because of parental refusal, while the others anticipate a future transplantation (6), have experienced symptomatic improvement (4), or have relocated abroad (2). We conclude that the major barrier to marrow transplantation for sickle cell anemia is lack of an HLA-identical donor. But since only 6.5% of all children with sickle cell disease were considered eligible for transplantation, it is possible that other significant obstacles remain to be identified. For patients reported to meet eligibility criteria, parental refusal and limited financial or psychosocial support were infrequent barriers to transplantation.