Kaylee's Story
Kaylee is 6 years old and was born premature, weighing only 3 pounds. Miraculously, she didn’t need to go on a ventilator and learned to bottle-feed in no time. She was able to go home in a matter of weeks. Kaylee was born a fighter and has maintained that resilience. About a week after going home, the family learned that Kaylee has Sickle Cell Disease, HbSS, the most severe form caused by inheriting two copies of the abnormal hemoglobin S gene (HbS) from both parents.
Abnormal hemoglobin molecules form rigid, sickle-shaped red blood cells that can block blood flow. This can lead to chronic pain, anemia, organ damage (including the spleen, kidneys, and the heart), and an increased risk of infections. It can also cause severe complications, such as acute chest syndrome (chest pain and shortness of breath), stroke, and organ failure.
Over the past six years, Kaylee has been admitted to the hospital four times. She is currently receiving blood transfusions once a month because her three-month cranial Doppler scans show that sickle cell disease could cause strokes in the brain. Despite all of this, Kaylee has a bright spirit. She dislikes being stuck with needles and receiving extra vaccines, and she does not like the powdered liver medicine that comes with the blood transfusion. She describes the medicines she takes as “nasty,” she’s not a fan of the Sickle Cell medicine either. That said, she does love the Doppler scans and MRIs, and she still finds moments of joy on her transfusion days with the wonderful staff @ The Ped’s Day Clinic in Greenville, NC.
To look at her, you wouldn’t know that she’s carrying so much inside her. Kaylee is a happy, energetic, fun, loving, warm, and compassionate child, sometimes stubborn, but always guided by a strong faith. She loves God and His son Jesus, and she loves people. Her favorite saying is, “We are supposed to show people how to live like Jesus so they can make it to God when they pass out” she doesn’t say “die.” 😊
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Kaylee has been in the care of her maternal grandparents since she was born. They have custody of her, full of love, lessons, and resilience. Through it all, Kaylee’s resilience and faith light up their lives. They navigate each new diagnosis, appointment, treatment, and challenge together as a family, with gratitude for the small victories and the moments of normalcy they can create as a family. They are so grateful for the support and community around them. Their hope is to share Kaylee’s journey to help others understand sickle cell disease and to remind everyone of the power of faith, love, and community.
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Kaylee's grandmother "A huge Thank You to Mouse Dreams for making this happen!"