Monday, April 20, 2009
As parents who saw how difficult it is to fight A.L.D - We now have to deal with bullies at school , because of how their HAIR LOOKS. Yes, we saw it all - We saw how Owen and Dylan took in over 1000 needles - just to fight A.L.D. -- as a result, they lost their hair, it came back, and maybe it‘s not perfect , but it‘s just hair! We saw how they would chill due to high fever, or because they were "rejecting" the blood transfusion - or how they looked "lifeless" when their platelets were down, or how difficult it is not to eat for 6 days despite having the appetite because they were undergoing observation in the ICU. We saw them vomit large amounts of blood and pieces of their stomach tissue, due to the large amounts of chemo they received. We also saw the tubes being inserted via Owens nose to aid him in medication and eating, as well as other machines attached to them to monitor their vital organs. We also saw their insecurities when they had to use a mask, walking around with a bald head, unlike other kids who don't need a mask and their hair is growing normally. We saw how they bounced back and regained their confidence which now is starting to wither away because of Bulling at school .While we saw all these, we were in pain too. This pain is more pronounced now because of the bullying . Dylan and Owen do not need any of this , after everything they have endured.
Awareness Items From Zazzle
Awareness store ALD. Adrenoleukodystrophy, Alexander Disease Awareness, Krabbe, MLD, AMN, Leukodystrophies 10% of sales go to Little Warriors