Inspired – the story of a sibling from Portugal


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!


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The Day Sanfilippo Won

It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. I lacked motivation to do anything, go anywhere, or be around anyone for a while. Every bit of stress and each unanswered question about my life were at the forefront of my mind. When a wave of sadness hits like that, it holds me captive. Read More

Image for Pitching a Super Sib President

Pitching a Super Sib President

You may not know that President George W. Bush, like us, is a super sibling. His sister died from Leukemia at age three. Over MLK weekend, the Bush family was at my family's favorite vacation spot and I decided to ask him for an interview on my new podcast. I walked up to the former president, my heart pounding, and pitched him my idea. Read More

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