Daniela from Daniela's Little Wish

Patient Leader

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!

Location

Sandy Hook, CT

Nominations

Best in Show: Facebook Advocating for Another Best in Show: Community

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

Daniela from Daniela's Little Wish

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