St. Francis Medical Center partners with the Red Cross every quarter to coordinate a community blood drive. Our drives help to ensure that the community has an available supply of blood for accident and trauma victims, patients undergoing surgeries and cancer treatments, and individuals who are suffering from chronic illnesses. Our February blood drive is dedicated to our Red Cross account manager’s 10-year-old little sister, Amara, who recently lost her battle with Jacobsen Syndrome and Trousseau Syndrome, a bleeding disorder. Blood transfusions helped to extend Amara’s life by eight years. Her sister tells her story.
Amara, born May 7, 2015, is the youngest of our father’s six children and was a twin. During her mother’s pregnancy, it was found that Amara had a rare chromosomal-deletion disorder called Jacobsen Syndrome. If she were to survive birth, her life expectancy was just two years. While it can be said that we had plenty of time to mentally prepare, our now-shattered hearts say, “There’s no such thing.”
There are approximately 200 cases of Jacobsen Syndrome globally. Our time with Amara has now added 10 years of medical data to understanding the expectations a family should have when sharing life with someone with this rare condition.
Throughout the course of her life, Amara endured countless blood transfusions to extend her life and to provide her comfort for the complications that she herself could not explain to us, though she tried. In the last year, transfusions became extremely difficult due to significant scar tissue, which challenged the nurses that cared for her and further added to her discomfort.
In my last encounter with her, January 9th, my dad called me on video stating flatly, “I’m taking Amara to the hospital to have a blood transfusion.” I could see how rapidly the trees were passing in the background, and I knew he was speeding. I carefully replied, “Okay,” understanding how helpless he was feeling as a father.
He asked me, “Can you talk to her – please?” I replied, “Of course.” He quickly passed Amara the phone and said to her, “Look, your sister.”
With all of the warmth I could muster, I quipped, “Hey baby girl, what’s the matter?” She angrily threw the phone as if to say, “I’m tired.”
Once my dad retrieved the phone, there were tears on his face. As his eldest daughter and close confidant, I had no words that felt fair to say aloud, so I simply said, “Drive safely and let me know when you get to the hospital.”
I was ultimately relieved to have found out later that evening that she was home resting with a new pint of blood from a stranger in her body.
Amara’s life was the definition of unconditional love, and I am beyond blessed to have been one of the many people whose life was touched by having her in it. All of that said, I know that the contributions we all make to the Red Cross feel thankless, but I kindly ask that you take this as a reminder of how impactful you are – whether you are a donor, a sponsor, a blood program leader, or an employee – you are deeply appreciated by the patients and their loved one’s alike. On behalf of everyone who got to experience life with Amara, thank you!!
The healthcare team at St. Francis is grateful for the joy Amara brought to all those around her, and we are thankful for her family and friends who loved and will continue to love her so well. If you feel led to be a blood donor, sign up online at www.redcrossblood.org. Enter sponsor code StFrancisMedical. Thank you for your gift of life and love.
