Patients and Families
am the mother of three boys one of which is unaffected by WAS, one that has
XLT/Mild WAS and one that is unaffected and is a HLA match for his brother
(youngest son). Billy is now 17 years old and is planning on going away
to college this year (boo hoo!). He has never had a bmt but we did opt to
have his spleen removed when he was two years old. We credit the
splenectomy for his normal platelet count and active quality of life. He
takes prophylactic amoxicillin and gets regular infusions of IVIG.
led a very normal life that includes playing football (jr varsity and varsity),
baseball (since the age of 4, jr varsity and varsity), LaCrosse (his latest
love), roller blading, skiing/snow boarding, water skiing, and other associated
sports. He is an incredible young man with a depth of soul seldom seen in
someone his age.
early years of Billy's life were very scary since we couldn't know whether or
not he would become challenged by infections, bleeds and other WAS
associated symptoms and we lived in fear that he would. Back then
there wasn't any tests to confirm WAS and we often quesitoned and challenged
the diagnosis of WAS. We ultimately decided to forgoe the bmt until
and unless he developed symptoms of necessity. This was a very
challenging choice for us to make and although I have questioned myself
(during challenging times) and my decision I have never regretted my choice.
Contact: Rosalind Cardia at the WASDiscussion Forum