Our daughter and sister Charlotte was born with a rare genetic variant causing her to have a Combined Immunodeficiency. When Charlotte received her Measles, Mumps, Rubella (MMR) childhood vaccines, she actually contracted Rubella unbeknownst to us. At the time that she was vaccinated, not even her healthcare providers knew that Charlotte had any existing medical ailments. After many long years of research and symptomatic treatment for widespread conditions, it was determined that Charlotte is in need of a Bone Marrow Transplant (BMT) to rid her body of Rubella and correct her immunodeficiency.
Charlotte’s long road began years ago, but tomorrow is the beginning of a new phase for treatment and the next chapter of her promising life. She will be admitted to Children’s National Medical Center in Washington, DC where she will begin preparing for, undergoing and recovering from her life-changing BMT scheduled for February 21, 2024. Once this initial phase is completed, Charlotte will then be relocated to the Ronald McDonald House on campus where we anticipate she will remain up until the medical team clears her to continue her post-transplant recovery at home. Her life will be very regulated and contained until she reaches a point in the future, perhaps 12-18 months post-BMT, when Charlotte can then embark upon her new normal, living her life with more freedom and less illness. She has her sights high for the future.
Despite lifelong limitations that have characterized her battle with her Combined Immunodeficiency thus far, Charlotte has a fulfilling and promising life where she is currently actively engaged in home-school learning programs, and she has excelled as an Honors student. She loves being involved in her local Girl Scout Troop and cherishes the friends she has made. In the weeks and months leading up to tomorrow’s hospital admission, Charlotte set big goals for herself and was determined to crush previous years’ Girl Scout cookie sales. She is greatly appreciative of the support she has received. To date, Charlotte has more than tripled her original sales goal and her work isn’t finished yet.
Charlotte enjoys spending time with her blended family; using her artistic talents to fashion crafts; playing board and video games; traveling and experiencing live entertainment. She is an aspiring singer, songwriter and piano player and her dream is to meet her music icon – Taylor Swift!
She embodies an empathetic and natural sense of care for others that shines daily. Just recently, on a drive home from Children’s National Medical Center, Charlotte spoke pensively about the conditions of homelessness witnessed as we made our way through the Nation’s Capital. After the BMT is behind her, she intends to plan and prepare cooked meals to distribute around to those who are less fortunate in our local community. We are committed to seeing this effort through with her.
Charlotte has maintained her indomitable spirit and continues to inspire everyone in her presence with her big heart and generous nature. We couldn’t be more proud of this special young girl and amazing human being.
We would like to express our deepest appreciation to the staff at Children’s National Medical Center, the National Institutes of Health (NIH), National Marrow Donor Program (NMDP) - formerly “Be The Match” - and the countless people working tirelessly in the background to give our precious little girl a second chance at life.
Our family would also like to extend our heartfelt gratitude and thanks to all of you. Your continued support, love and prayers mean so much to all of us, especially Charlotte. She is at an age where her relationship with God is evolving to higher levels of discernment. And she is touched beyond measure knowing of all the people praying for her successful recovery and the chance for the bright future she envisions.
We will update on her status whenever possible and invite you to visit often.
Your prayers for Charlotte’s complete and rapid recovery are blessings we all welcome – please keep them coming!
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