In each issue of HemAware, we spotlight someone in the bleeding disorders community. In this issue, we speak with Daniela Delgado, 9, from Stamford, Connecticut, with severe von Willebrand disease (VWD), type 1 C. Along with her parents, Janine Achury and Nemorio Delgado, she created Daniela’s Little Wish, which delivers cakes to children with disabilities or illnesses.
How did you first discover your love of baking?
Ever since I can remember, everyone in my home was baking. My parents are both cake designers. When my grandma comes to visit she is always baking. I guess it just runs in the family. My home always smells delicious because there is always a cake in the oven!
How did your cake baking turn into a charity to help others?
I had a friend in pre-K named Kevin who had cerebral palsy. I used to try and help him because he couldn’t do a lot of the activities we did. I wanted to try and help more kids, but I couldn’t figure out how until I thought of cake! I just want to bring a smile to kids’ faces, and help them forget their illnesses. So now people find us on Facebook or through word of mouth, and tell us what kind of cake they want. We give them a cake for free for their birthday.
How does VWD affect your life?
I have a lot of nosebleeds, sometimes during the middle of the night or during the day. Sometimes I can’t play certain contact sports because I don’t want to get hit, so I have to sit out PE to avoid the other kids playing rough. I have a special medication to help me stop the bleeding. When I was 8 years old, I learned to infuse myself with factor. I practice how to do it, just in case I have an emergency or a heavy bleed. I know it looks scary to some people, but it actually makes me happy that I know how to do it.
What do you want people who don’t have a bleeding disorder to know?
Bleeding disorders aren’t contagious, and are actually passed on from generation to generation. I want people to know that bleeders are not to be bullied. I talk about my bleeding disorder with my friends and family because I want them to know not only about my condition, but also if they have symptoms that they should get them checked out.
At 9, you’ve already done a lot with your life. What do you want to do in the future?
I want kids who have a special condition to know that we need to love ourselves as we are. I would like all people to accept and love all kids with illnesses or disabilities because even though we have differences, we’re really all the same.
I want to continue giving cakes to children with illnesses and disabilities. The more smiles I bake, the better. I want Daniela’s Little Wish to grow and bring cakes not only to kids in Connecticut, but also to kids across the US. And why not the world? I know those are big dreams, but with my mom and dad to support me, I think I can do it!