Hello, my name is Sofia and I’m 10 years old. I’m from Portugal and I’m learning English. I have a sister named Joana, she is 15 years old and suffers from a rare disease called Sanfilippo syndrome.
My favorite place to go with her is the beach, especially in the summer, because we spend the whole day there and days are sooo long in summer! The pool is also one of our favorite places, mainly because Joana and I love to do dives!
I play with her hide and seek, I read to her Anita’s book, because it has very beautiful drawings and she pays attention. I give her lots of kisses and hugs. What inspires me the most about Joana is her smile. I think Joana is FUNNY. She has a terrible illness, but she is very happy.
I think projects like The B.L.A.I.R. Connection are important because they allow the communication between siblings of special children, allows us to meet others like us and we feel less alone. After all, there are many other brothers facing tough problems!
Why Super Siblings Deserve All The Hype
When you and your partner start deciding to have children, your mind may start to dream up all of the different scenarios and directions your life may take you. The one thing you probably never dream up is what life would be like with a child with a disability. Read More
We Do Our Part for Haidyn
Due to the Coronavirus, many have been social distancing for months now. We take this seriously for kids like Haidyn, with Sanfilippo Syndrome. While we may not be required to stay home anymore, I will keep sharing the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others. Here's why you should do your part for Haidyn. Read More