Living with sickle cell
A mom writes about her son’s chronic blood disorder
Eleven years ago on March 17, 2003, we were blessed with a beautiful baby boy names Ja'Kiyran McArthur, also known as J.T.
Two weeks after he arrived we received a letter from the hospital where Ja’Kiyran was born, stating he had a chronic blood disorder called sickle cell disease. We were panicked, scared and very young. At our first scheduled visit with Cook Children's Hematology department we were informed that in order for a child to have this disease both parents have to carry either the sickle cell trait or an abnormal form of hemoglobin.
Over the years we have endured countless medical center stays due to sickle cell crisis*, pain episodes, blood transfusions and antibiotic therapy. Often times, we felt hopeless and therefore received counseling when he was 6 months old.
We have learned to take it one day at a time, remain encouraged and enjoy each good day he has. Our faith teaches us that love, positivity and believing in the miraculous conquers all.
Even though we are exhausted and financially strained when he becomes ill, we wouldn't trade our struggles or this amazingly smart young man for anything in the world. We are extremely grateful to Cook Children's for providing excellent care and showing us and our son love and constant attention. The nurses are amazing and make each stay feel like being at home. The physicians are consistent and persistent when it comes to getting him well.
Everyone works together to create a loving family and superb care. We thank God for our hospital family and their tireless efforts. We want to remind everyone to get informed about this disease and help us to raise awareness and find a cure for all who have to live with it every day.
Mrs. Ashley McArthur