The B Strong Group Sickle Cell Disease

Meet Our Warrior: Sara

“My name is Sara Giannelli.  I am one out of 9 children and I have Sickle Beta Thalassemia.  While it isn’t Sickle Cell Anemia it is a variant of SS.  Living with Sickle Beta Thalassemia has had its ups and downs but I’ve never let it stop me from doing anything.  I know most people would be upset about having a disease that is always affecting their life but I don’t se it that way.  I see it as a part of me that brings out the strength of God through me.  It’s something that I battle and in these battles come testimonies.  Testimonies that I can share to motivate others like me or others who face battles in life.img_0167

At the beginning of this year, I had a sickle cell crisis so bad that I needed to go to the ER.  That same day, I was also supposed to work a junior tennis tournament 2 hours away in Columbia, SC.  As I was laying in the ER, I considered calling and telling them I couldn’t work but there was this little voice that was telling me to push through and not back down.  So I got up, packed my bags and left for Columbia.  It was pretty cold in Columbia at that time but I felt that God was going to get me through the weekend.  He did.  I am now 20 years old and I’ve had several episodes.  I am thankful for how God and my family have been with me through these years and many to come.”   ~ Sara

The B Strong Group Sickle Cell Disease

It’s A Family Affair

I’ve asked each of our immediate family to share their own words about how Braden having sickle cell disease impacts them.  Here are thoughts from one of his big sisters…..

 

I love these pictures of me and my baby brother. These are hands down my favorites for many reasons. When I left for college I missed out on a lot of things that you can’t see through a phone call. One of those things was my brother Braden. These pictures were actually the weekend of my grandfather’s funeral. And the first time we’d gotten to truly bond in years. In these pictures and that weekend he was a normal, carefree, CRAZY 😂, kid. It wasn’t until I actually moved back 2 years later that I saw the reality of his situation. Yes there were TONS of moments like these. But I’d never actually seen him in a real moment of sickness. And the first time I did it scared me. I still remember that unshakeable, feeling of helplessness. THIS is what families of children with Sickle Cell disease deal with every day. Fear, worry, sadness, helplessness, EVERY DAY. THIS is why my parents started The B Strong Group. THIS is why we share as much information and events as we possibly can. We want these families to know that we understand their struggles. We understand their emotions. No family should have to go through this alone. #SickleCellAwarenessMonth #TheBStrongGroup

-Ebonii (2018)