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

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)

Why Are You Smiling?

Not too long ago, my son and I participated in a fundraiser for our local children’s hospital.  We arrived for our portion of the event a little early and proceeded to check in to let the organizers know that we were there.  I recalled greeting several people with a smile on our way to the check in table.    Later on when it was time to do our interview, we were introduced to the interviewee and he said, “I saw you earlier when you came in and you had this huge smile.  I had no idea that you were a mom of one of the miracle children we were going to interview.  Why are you smiling?”me and braden

I immediately processed the question.  I thought about how I was feeling at the time.  I thought about how well my son was feeling at the time.  We hadn’t had a hospital stay in a while and we were managing his illness very well.  I then proceeded to answer our interviewee, “God is good! Why not smile?”

Trust me, this journey is not all smiles and I’m human but when I think of all the goodness that God has granted us, I must smile.  It took me a while to get to this point.  The guilt, the constant worrying, the “woe is me”…..I had to learn to deal with it all.  It took time, prayer, sharing how I felt, listening to those who wanted to help me to get to this point of smiling.  When I catch myself sliding back into the gloom,  I check myself and my attitude, say “Thank you, Jesus” and I smile.

I smile because my God is good!

 

Proverbs 17:22 King James Version (KJV)

 A merry heart doeth good like a medicine: but a broken spirit drieth the bones.

Our Inaugural Event

Our first event, Braden’s 12th Birthday Bash & Blood Drive, was a success!  We are so thankful for the support of our B Strong Team, volunteers, family and friends, our event partners: the American Red Cross and the Richland County Recreation Commission, sponsors, supporters, our community and of course our B Strong Sickle Cell Warriors!  They are our motivation!Braden

Our mini kickball tournament was a hit!  First place went to Braden’s Ballers; 2nd to Kick Squad, Third place to the Munchkins and Fourth place to Just Kick It! Thanks to all of our participants and coaches!!

Our silent auction that included some wonderful items was also a hit.  The food prepared by Congaree Convenience Catering was delicious and plentiful!  We are thankful to all of our vendors who provided information and services to our guests. They included DHEC Camp Burnt Gin, A Healing Touch Chiropractic Center, Be The Match, Cilly Cell Project, Richland County Sheriff Department’s Deputy Kevin Lawrence and Sheriff Leon Lott and the James R. Clark Memorial Sickle Cell Foundation.  We enjoyed entertainment by Beyond Words Dance Academy and Heart of Ice Sculptures!Sheriff LottAsbury

Thank you all for making this a wonderful first event! Stay tuned for future B Strong Events!

Dep K Law