Advocates for Love and Rarity

By Jack & Chandler, Fanconi Anemia & Epilepsy, United States, June 29, 2020

Advocates for & with Each Other

We are Jack and Chandler from Chicago, IL. Jack was born with Fanconi Anemia (FA), a rare DNA repair deficiency and bone marrow failure genetic condition, and Chandler has been living with Epilepsy since 2008 when she had her first spontaneous seizure at age 8. Jack was diagnosed with FA in 2001, and underwent a Bone Marrow Transplant in 2002 at age 3 after the observance of 8 birth defects and undergoing general anesthesia for various procedures 4 dozen times within those first 3 years of life. Chandler experiences seizures varying from grand mal, petit mal, absence, and nocturnal for which she takes 10 pills a day to manage/lessen the severity and frequency of. 

Today, we remain relatively healthy while managing symptoms due to our respective conditions and risks for the future. Together, individually and as a couple, we give back to our communities by actively engaging as advocates for the Fanconi Anemia Research Fund, The Epilepsy Foundation (local and national), and affiliated organizations. Despite our conditions, we live life one day at a time and are incredibly grateful for every day that we have while looking forward to our future!

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