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!
The following blog was published by The B.L.A.I.R. Connection’s partner, Patient Worthy. Rebecca is big sister to 10-year-old Amanda who suffers from a rare form of epilepsy. The family travels far from home with assistance from Miracle Flights, the nation’s leading nonprofit flight organization, to reach the specialized care she… Read More
I always knew that without a cure, my sister’s time with us would be limited. And with this inevitable loss of my sweet Blair, there would be a funeral. While our family always aimed to think positively about Blair’s illness, this is the only detail about the end of her life that came to my mind often in the years before her passing. Read More