Juliet Christina Belcher
On September 1, 2004 Juliet Christina was born with a head full of dark brown hair and a future of amazing promises of love and hope. At three days old she was hospitalized for the first time. This was the first of too many hospital stays, lab visits and specialist appointments to count as a result of what was later discovered to be a rare medical condition called Mitochondrial Disease.
She grew up and became a girl who loved books, dogs, crafts and her time at the lake. She thrived on interacting with people, especially her loved ones. But on a daily basis Juliet fought severe hypotonia (low muscle tone) that prevented her from being able to sit, crawl, stand, walk or move independently. She had swallow dysfunction and was initially fed with a g-j tube that bypassed her stomach and fed directly into her intestines. Eventually, Juliet’s stomach no longer functioned and in October 2019, a central line became her nutritional lifeline.
Despite the fact that she was nonverbal, Juliet lit up the room with her smile and her laughter. She loved people, especially little children. Jules was a book worm who would listen to her Mommy, Daddy or nurses read to her all day.
Since Mitochondrial Disease affects the mitochondria of the cells (the energy producers), any type of stress on Juliet's body could quickly put her in a dangerous situation. Juliet was not able to fight infections well and struggled when exposed to hot or cold temperatures. She was at great risk when exposed to something as simple as the common cold which landed her in the hospital for lengthy ICU stays and intubations several times. Yet throughout the years she never lost her infectious smile.
Juliet presented with many symptoms, the most serious being lactic acidosis and renal tubular acidosis, neutropenia, pancreatic enzyme deficiency, cardiomyopathy, seizures and obstruction of her digestive system. Each and every day was a struggle for Juliet, yet she was the definition of resiliency. Juliet has taught everyone about courage and bravery. Her family is thankful for every day spent with her.
Over her 16 years of life, Juliet had the support of numerous nurses, teachers and therapists. Her family is extremely grateful for their love and meticulous care of their little angel. Juliet had quite the infectious personality and her caregivers would spoil her rotten. Juliet loved being told how beautiful she was, especially when waking up in the morning and when she was positioned on the side of her bed, ready for her Uber lift to the living room by Uber Daddy. Jules had a great sense of humor—conversations between her whispering parents always made her giggle. She laughed and shared huge smiles for the silliest things—counting when her IV site was being cleaned with an alcohol swab was a favorite. Everyone knew Juliet was the boss and she wanted to be sure it was being done well.
There are so many doctors for whom the family is very thankful. One doctor in particular who has managed Juliet’s care since she was three years old, Dr. Christopher Raab from DuPont. He often assessed Juliet’s health by seeing how quickly Jules would steal his stethoscope off of his neck. This amazing man was available to Juliet and her family around the clock, from locations all over the world if needed. Juliet was lucky to have had a team of people at DuPont and CHOP who worked tirelessly to bring her the best possible life.
Despite being home on hospice since November 2019, Juliet enjoyed a remarkably good beginning to the summer at her vacation house in the Poconos, her happy place. At the beginning of July 2020 Juliet took an unexpected turn for the worst. Juliet Christina fought hard and continued to smile until the very end. Juliet passed away from complications of her Mitochondrial Disease on September 5th, 2020 in the arms of her loving parents with her dogs nearby.
The gallery below is a tribute to Juliet Christina from her family and friends.
Virtual Celebration of Life for
Friday, September 11, 2020
Please share a prayer, memory, or picture.