Saturday, January 24, 2009


Can you believe that we are almost on day +1000! Pretty amazing! I was hoping we would never be here...but here we are ;-) I told one family that the doctors should update the WAS survival statistics because WAS boys are living many more years than what the statistics say...even boys who do not undergo treatment (spleenectomy nor BMT). Also, boys are living longer with post BMT complications because of medical advancements (I'm not sure this is a blessing or not, so I'll let you decide).

In cyberspace, I have met some of the most beautiful people and parents who are dealing with WAS.

Recently, I had the pleasure of meeting:

Declan's mom, Lanta - her son is starting preconditioning on Feb 2.

Viggo - The Larsson family from Sweden - You can use Google Translate to translate their Swedish language into English. This 1-1/2 yr old boy is having preconditioning right now and his transplant on Wednesday.

I also want to thank Sumathi who started the new WAS Forum on the Primmary Immuno Deficiency Forum: Sumathi's son is 10 years old and has not had a spleenectomy or BMT. WAS parents, please introduce yourself.

I have been privileged to meet many families around the USA and in other parts of the world! Thank you all for creating an encouraging community!!!!

May you all have peace and joy while dealing with a very complicated disorder.



Anonymous said...

Hello aimee! I just found your blog while I searching about WAS. Ill make a presentation about it at university next week. I must tell you that im pretty impressed with all this story and your strength. You will see everything will be fixed, sooner or later!

Your baby is the most adorable thing on Earth. Keep that in your mind!
Best wishes,
Sofia Ferreira , Portugal

Paige said...

Yeah, I'm loving the IDF forum! It's a lot of information in one place!