Russell is One in Seven Billion
Like many mothers, when Jessica held her newborn son in her arms for the first time, she knew she was holding a miracle. He seemed like one in a million. What she didn’t know was that her little miracle defied much longer odds than that.
Within days of Russell’s birth, doctors diagnosed Russell with a rare brain condition called semi lobar holoprosencephaly, an incomplete division between the two hemispheres of the frontal lobe of the brain. With the diagnosis came a new, shocking reality: doctors said Russell would never walk, talk, or ride a bike, and could have trouble maintaining body temperature, not know when he was hungry, and could stop breathing at any time. He then required a feeding tube and it was discovered that he had intestinal malrotation. Doctors said that he had a 1% chance to survive six months of life.
In the months that followed, Russell survived kidney failure, septic shock, became dependent on a tracheostomy and a genetic syndrome, Cornelia DeLange Syndrome SMC3, that is only documented in one other human being on the planet, paired with the brain condition.
Russell’s chances of survival became one in seven billion.
“To everyone else, Russell’s quality of life was expected to be zero,” Jessica shared. However, that’s not what Russell had in mind. Soon, Jessica learned that her son’s quality of life was not defined by a diagnosis. There were also other surprises ahead: Russell hadn’t yet met “everyone.”
Russell was introduced in 2019 to Variety the Children’s Charity by a physical therapist. He was 1.5 years old at the time and applied for Variety’s Medical Equipment program. Variety started filling the gaps to fund life-changing equipment that was deemed medically-necessary but denied by insurance. Without Variety’s funding, Jessica and her husband’s only recourse was to pay out of pocket, something that would be impossible when factoring the rest of Russell’s significant medical needs.
In the years that followed, Variety help fund a manual wheelchair, SleepSafe bed, bath chair, activity seat, and accessories for his wheelchair and stroller. With each piece of equipment, Russell’s life became more comfortable and his world more accessible.
Bath time used to be an uncomfortable part to Russell’s every day. Now that Russell has a bath chair, he is starting to enjoy bath time like other kids. He can sit upright and is starting to splash and play. He uses his arms and legs more and is learning to enjoy his surroundings.
Russell also experiences safety and support from his activity seat which allows him to sit upright, maintain posture, increase oxygen flow, and helps his digestive system work properly. The chair makes it possible for Russell to sit in a cart at the grocery store!
Bedtime is much more comfortable now that Russell has a SleepSafe bed. The new bed gives Russell a comfortable night’s sleep and makes it easier and safer for others to place him in and out of bed each day. Plus, it’s big enough for Jessica or her husband to lay beside Russell and comfort him during difficult nights.
While Russell might be non-verbal, he’s cognitive and is able to communicate with his eyes. He moves them right to left, up and down, and maneuvers well through the halls of his school. He’s a social butterfly and likes to be around people. He’s just like any four-year-old, learning how to share, interact with classmates, and playing with his sisters at home.
“Russell is still a kid and needs to have these experiences,” Jessica said.
When Jessica looks back at the past few years, she’s amazed at her son’s impact on the world. “I just enjoy staring at him, because with everything doctors told us he wouldn’t do, nothing surprises us anymore.”
To the world and statistics, Russell is a miracle and a survivor. But to his family and friends at Variety, Russell is an ordinary kid who likes to splash in the tub. Thanks to the support of “everyone” on Russell’s team, he’s able to have these ordinary experiences and enjoy being a kid.