He is only one year old, yet his infectious laugh, bright smile and larger than life personality has inspired all he came in contact with.
Jaylon Allen was not expected to live beyond one month, but yesterday he celebrated his first birthday. His resilience and unbreakable spirit in the face of his rare bone disorder have inspired his family and the staff of the High Dependency Unit (HDU) at Mt Hope hospital to cling to hope when the prospect of a brighter tomorrow seems to fade.
Jaylon has been diagnosed with Osteogenesis Imperfecta, also known as brittle bone disorder.
His mother Britney Moore says her son’s entry into this world has been filled with challenges.
“When Jaylon was born, he was born with two broken femur bones, three fractured ribs and two fractured arms,” she said.
Jaylon is so fragile that he runs the risk of fracturing bones just by sneezing or laughing. However, he was in all smiles for birthday celebrations.
Moore says doctors are yet to determine the severity of the disorder, however, the one-year-old has been dependent on ventilator machines for oxygen.
“He hasn’t reached to the point of being on life support, he just needs the pressure on the vent to keep his airwaves open because he has chronic lung disease and he needs the little push to keep him going.”
Jaylon has only known the walls of the HDU unit at the hospital as his home.
Britney had one special wish for her son: “I wish that he would actually get better and head home and be home with me so we wouldn’t be up and down the hospital, I have a next son home and it feels like I neglect his brother sometimes, I want him home badly.”
Britney says while the staff at the hospital has been kind to her and her son, it’s time for him to come home, however, things must be put in place to facilitate his special needs.
She has also taken an active role in raising awareness of the challenges of living with brittle bone disorder.
About the genetic disorder
Osteogenesis imperfecta (OI) is a genetic disorder that prevents the body from building strong bones. People with OI might have bones that break easily, which is why the condition is commonly called brittle bone disease. OI happens because of a defect in the gene that makes the protein collagen. Collagen is an important building block of bones.