Why I am joining: I am a Proud US citizen who is also a Proud Mother to a Beautiful, Smart & sweet 7 year old girl with Pompe Disease. She is not able to break down glycogen (sugar stored in our body) due to absent enzyme alpha glucosidase. The only treatment is Enzyme replacement therapy . She has lost all movement in her body, she is tube fed & vent dependent. Cognitively she is not affected, her mind is like any 7 yr old.
I march with her and for her, for her disability rights , public school homebound education & most importantly her healthcare rights . I Love my Daughter, she deserves respect & rights like every human being does.
Biographical statement : I am joining this march on behalf of my 7 year old physically handicap & medically complex care Daughter. She is intelligent, Beautiful, sweet & kind! She deserves respect & human rights like any able bodied person. She deserves a Education and recourses to support our special needs & homebound Teachers . She needs her health Insurance to LIVE! Please visit her FB page to view our Journey and how budget cuts would impact her life www.Facebook.com/AngelsForPB