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A Little About Who I Am

My name is Sofia, and I am 13 years old. I am an American / Peruvian living in Florida. I live with my mom, dad, and younger sister and younger brother. I have 3 ferrets, a dog, and 2 stray cats.

I love animals, especially horses. One day I hope to own a horse. I dream of learning to ride and just spending more time with these magical animals. My love for animals makes me think that being a Veterinarian may be in my future.

I started this charity because in October of 2020 I was diagnosed with Ehlers Danlos Syndrome (also known as EDS). For years my parents had been taking me to many doctors because I was always having migraines and pain all over my body. Finally they found that I had scoliosis, and my pediatrician was concerned because of the fast change in my back and my bad hip and back pain. Some parts of my body did not really seem like they wanted to stay in place. So I was put in a back brace and they did an MRI to see if anything else was wrong. They found that I had a cyst in my spinal chord almost the whole length of my spine. I was also breaking out in hives and rash all over my upper body, but all my allergy tests were normal. Nothing was making anything better. So now the doctors are starting to wonder what is causing all these problems. So I went to a geneticist and they confirmed with my diagnosis. They found some problems with my heart and maybe some problems in my cells, but we are still working on those issues. However, we now know that I have a genetic disease that causes many of these problems.

When I found out that I had a rare condition that has no cure, and let's face it, there really is no treatment either, I felt like a big chunk of my life was stolen from me. I felt so empty and alone. I was not in a happy place, but it made me think of all the other kids all over the world that had been told the same thing. Those words, "that you have a a very rare condition and there is nothing no one can do to make it better." So I decided to be productive and help in anyway I could, as many kids as I could. Even if it is to let them know that THEY ARE NOT ALONE!

I want to create a community of families that in some way are experiencing what my family and I are. I want to show this "Rare Condition" that we are stronger, and that we stand together to support each other, and we lend each other a Helping Hand.

I promise to be here for any kid that needs a cyber hug, an ear to talk to, a shoulder to cry on, or just someone to know "the feeling". I will work hard, with the help of my family and everyone involved in this amazing project, to create a happy place where kids and their parents can feel like they are not alone.

It is a huge goal for just one family, so I need the help and support from as many people as I can possibly get. I need this project to grow so big that every single kid with EDS knows and is a part of this community. So let's make EDS a reason to bring us together and not for us to stand alone. OUR HOOF BEATS WILL BE HEARD AND FELT!!!!!

Much love to you all!

Sofia :)

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