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!
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More