03/18/2021
Support kids like Elise by registering for Dance Marathon. Elise is 10 years old and has Jacobsen syndrome and Paris-Trousseau syndrome -
Elise’s parents learned she had health problems before she was born, when a prenatal ultrasound showed a kidney defect. But Elise was born with numerous other health issues, and when she was three months old she was diagnosed with two congenital conditions: Jacobsen syndrome and Paris-Trousseau syndrome. This combination of conditions means Elise has numerous health issues including immune deficiency, a blood platelet disorder, hypothyroidism, ADHD, and epilepsy, among others.
Jacobsen syndrome is a lifelong and devastating condition—a quarter of children with it die before their second birthdays. But Elise, now nine, is exceeding her initial prognosis. Elise will always be at risk for hemorrhages because of her blood platelet disorder, but time has resolved some other problems, including two holes in her heart which have closed on their own; Elise’s family also hopes that her epilepsy will resolve during her teen years. The family recently moved to North Carolina from Michigan, and Elise’s parents chose Duke Children’s as her place of care based on research and Duke Children’s world-class reputation. Elise sees many specialists at Duke Children’s, all of whom work to make her as comfortable as possible during procedures and tests.
Elise has had seven surgeries in her young life, but this extroverted and charismatic little girl doesn’t let her medical conditions stop her! Elise is a third grader who loves playing with her dog, Maximus. She also loves singing, basketball, and pancakes—she was a member of IHOP’s first-ever Kid Culinary Team, and traveled to IHOP headquarters to prepare her special recipe of Chocolate Cat Pancakes with Raspberry Custard and “Chocolate Chippies.” Elise also advocates for children’s hospitals that help kids like her. Elise has a full and happy life thanks to surgeries, medical monitoring, and the support of her family and friends.
