The B Strong Group Sickle Cell Disease, Uncategorized

Spreading Awareness

We were invited to share our story at an American Red Cross Blood Mobile presentation.  Generous donors funded a bloodmobile for our local Red Cross office.  We were happy to represent The B Strong Group and share our story to let the donors see who their generous donation impacts.  We were able to meet the donors and thank them in person.  We shared our sickle cell story and told the about our organization and the things we want to do.  bloodmobile talkWe want to support those with sickle cell disease and the other organizations that provide support for those with sickle cell disease.  We are determined to promote the importance of blood donation to those with sickle cell disease.  We especially want to encourage African Americans to donate blood because a lot of sickle cell patients need our type of blood, as well.  Blood donation will always be a priority to The B Strong Group because a blood transfusion helped to save our son’s life.  We will never stop advocating.

A look inside the new blood mobile that was donated to the Columbia Red Cross office.

The B Strong Group Uncategorized

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

The B Strong Group Sickle Cell Disease, Uncategorized

Our Story.

My husband and I found out that our son has sickle cell disease when he was 3 months old.  The newborn screening performed in our local hospital upon his birth identified that Braden has Sickle Cell Hemoglobin C disease.  My husband has the trait and I have an abnormal Hemoglobin C.  I (mom) had no idea of our son’s chances of having sickle cell because I had no idea of my or my husband’s genetic status.  Needless to say, we had a very deep learning curve.

The majority of our education of this disease came from our son’s hematologist, pediatrician, our local Children’s hospital and its foundation and Google.  I tried to learn as much as I could in order to appropriately advocate for my son.  There were very stressful times throughout our journey, trying to understand discern if his symptoms were sickle cell related or just normal childhood ailments.  A fever of 101 degrees F, was a required Emergency Department visit.  For the first 5 to 6 years of his life, he was hospitalized multiple times per year for mainly infection issues.  He is prone to pneumonia and has battled it numerous times.  In 2015, he was diagnosed with acute chest syndrome and it nearly cost him his life.  That was the most scariest time of our lives with Braden.

We are blessed to still be able to tell our story with Braden with us.  We are still learning as much as we can and through this organization, hope to spread awareness about this disease, hope to be able to advocate for Braden as well as other children and adults who suffer from this disease and to listen to our warriors and their caregivers as they share their stories.

Good company in a journey makes the way seem shorter. — Izaak Walton

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