Amelia
A Trisomy 18 Warrior
Amelia was born the youngest of three children to her parents, Kim & Bill, on Friday the 13th of 2020 (aka the day the world shut down), a tiny 4lb 3oz with a prenatal diagnosis of Trisomy 18 (full). Half the size of her brother and sister at birth, and with a moderate vsd that could not be repaired due to pulmonary hypertension, she proved she was a fighter.
She came home only on low-flow oxygen after a week of being in the NICU. She had some apnea events at home that required her to be hospitalized again on her due date. She spent months at Dayton Children's Hospital, where lifesaving interventions were provided. Newly trached, on oxygen and a ventilator and with a g-tube, she was able to have the support she needed to thrive.
In August of that same year, shortly after her mama's birthday, she was welcomed back home into the loving embrace of her parents and siblings. Since then, she has had many ups and downs. Her first year home was difficult with multiple hospitalizations as her immune system struggled with various infections and illnesses, some of which nearly took her life. She overcame all of these obstacles, with her beautiful smile, stronger than ever before—a testimony to what is possible with God.
Recently, Amelia celebrated her 5th birthday and will start Kindergarten in the fall. She uses an eye gaze tablet to communicate. She loves asking for sips of lemonade, coffee, and pop. She has been working on walking and will hopefully soon have her own gait trainer here at home. She LOVES music, dancing, and has two signature Amelia poses: on her back, arms behind her head with legs crossed (her yoga pose), and a side sit with one arm propping her up (like a mermaid).
Although she still gets sick, the severity of her illnesses and the duration of her stays have decreased. We relish in the gift of time that has been given to us as parents of a child with her medical complexity and pray that she will continue to show the world what is possible when you break the mold of a child with her diagnoses.
