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I 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.
Billy has 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.
The 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