Meet Caroline: 2017 Speak Now for Kids Family Advocacy Day Hero
Caroline was diagnosed with the rare genetic disease Isovaleric Acidemia before birth and that diagnosis was confirmed shortly after at Children’s National Health System. Her early diagnosis came thanks to the knowledge learned from her big brother’s delayed diagnosis, which was too late to prevent a devastating brain injury.
Her early diagnosis has enabled the medical experts in the genetics division to carefully manage her rare disorder enabling her to live a normal, healthy life.
Though Caroline requires regular, lifelong, management of her disorder, she enjoys all of the normal activities of any child her age and is not limited due to her disorder. Her true passion is horseback riding. Her condition has resulted in some hospitalizations, but the expertise of the specialists has prevented further complications. Still, she has frequented the hospital regularly for routine care since birth, and has come to know many staff members there.
Besides her geneticist, Dr. Summar, and dietician, Erin, Caroline loves Albert, who works in the hospital lab. Regular blood draws are emotionally and physically difficult for her, but Albert always has a way of putting her at ease. She hopes for him every visit. Caroline is a testimony to excellent, specialized care for her disorder.
Now 15 years old, Caroline is described as someone with a compassionate personality who does not let this rare disease become a barrier.
Help us welcome Caroline to Washington, D.C.!