My name is Daniela Delgado. I am a 11 years old girl from CT and I will be in 7 grade. I have a severe bleeding disorder(I have to infuse (inject myself in my veins) in order to have a "healthy" life. I also have Elhers Danlos Syndrome ( a connective tissue disorder affecting my joints (dislocate them in a daily basis) , vascular and skin. I use splints and support in. Y fingers , arms, wrist to do any phisycal activity. I'm in pain 24/7. But despite my condition when I was 4 years old in the kitchen of my home and with the help of my parents I found an organization named Daniela's Little Wish. I was helping them decorating a cake and I had a wish: be able to bring smiles to kids who were sick like me and nothing better than bake smiles in their birthdays. I bake, decorate and deliver custom birthday cakes at no cost for kids with life threatening illness and cupcakes for kids with special needs all around Connecticut, NYC and another surrounding states. I travel nationally giving motivational speaches to kids with bleeding disorders and teaching them that our disease will not define who we are! When I travel I don't like to have my hands empty and also bring a birthday cake in other states. I am an advocate for rare disease , visit Washington DC and speak with Senators, Governors, lawmakers for better health services. I am a guest speaker with National Hemophilia Foundation and I help to raised 40k for my bleeding disorder community. I have a FB page where I do awarness with all the kids I visit and I post information about their diseases (which their parents authorization) in order for other educate about rare diseases. I have other FB page where I post about free services and free stuff for kids with illnesses and disabilities from non profit organization offering their services. My beautiful mom have the same disease. I inherited from her. My dad is my hero, he cares aboy the 2 of us with love, compassion and support. He loves us unconditionally!
Sandy Hook, CT
She is amazing and always giving everyone wishes even tho she may have bad days with her bleeding disorder. Thank you for all your hard work — Darlene
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