Rich and Betty Randa have four wonderful grandchildren. They first became connected to Orlando Health Arnold Palmer Hospital for Children through their first-born granddaughter, Charlotte, who like her older brother, Graham, was born at Orlando Health Winnie Palmer Hospital for Women & Babies.
The first time the family went to Orlando Health Arnold Palmer was when Charlotte was barely three months old. Their new granddaughter developed a respiratory infection, causing a high fever and difficulty breathing. Once admitted, she was diagnosed with pneumonia. However, from her x-ray and blood work, the doctors suspected something more critical was at play.
Charlotte’s chest x-rays revealed skeletal abnormalities and abnormal blood values. At nine months old, Charlotte was diagnosed with I-cell disease (mucolipidosis II) – an inherited, rare, lysosomal storage genetic disorder affecting two out of one million children. For the four years of Charlotte’s short journey on Earth, chronic respiratory issues resulted in numerous lengthy hospital stays.
“Sweet Charlotte was blessed with a medical team comprised of loving, kind and compassionate physicians, nurses and therapists. Even nutrition and environmental staff offered a kind, warm, friendly smile, each and every day,” grandmother, Betty, remembers.
Brooke, Charlotte’s mom, recalls, “All four years, we felt like we were family. The doctors, nurses, specialists, and child life teams truly loved Charlotte. When she would be admitted, it wasn’t unusual to have nurses from a previous stay stop in to visit. The child life staff would blow bubbles and dance with her over and over. There was even one stay where the only person she would let hold her was her pulmonologist.”
On one particularly challenging stay, a music therapist came in and played music for Charlotte at her bedside. “Our dancing queen started wiggling her little bottom to the music,” Brooke remembers. It was the first time the family had seen her move voluntarily in days.
While transitioning to Palliative Care, and later to hospice with Charlotte, the family’s experience was the same. “We had met the Palliative Care team about a year before Charlotte’s passing. During that year before we transitioned, the team would not only call and check in on us, but they would come and visit anytime she was admitted. Charlotte loved their visits! She got so excited, because again, we were treated like family. When we transitioned Charlotte to hospice, the Palliative Care team was right by our side. In the days leading up to her passing, she was very tired and slept most of the day. One evening, Dr. Blaine Pitts came to visit and she wanted to sit up so that she could blow him kisses. It was an adorable memory in her final days.”
The Palliative Care team also helped Brooke and David, Charlotte’s Dad, in explaining Charlotte’s passing to their son Graham who was five years old at the time. “Orlando Health Arnold Palmer was there with us for our entire journey. From her first hospitalization at three months when we were stunned by the news that Charlotte was not your typical “healthy” child, to the very end when we were the most broken we’d ever been. That is something we will eternally be grateful for,” says Brooke.
In remembrance of their granddaughter, Rich and Betty Randa made a planned gift through their estate to Orlando Health Arnold Palmer to support children like Charlotte.
“Our hope is that our legacy gift will honor our precious Charlotte by blessing other children and their families,” says Betty. “We encourage our community to join us by sharing their time, talents and financial gifts. We want all our precious children to receive the health care they need, require and deserve.”