Dear family, friends and donors. Many of you may not know that our son Kevin or K3VIN_G, has osteogenesis imperfecta. This rare genetic disease, formerly known as brittle bone disease, has no cure.
It causes bones to break with the lightest touch, often on its own, without any contact. Even the simplest daily tasks are a challenge for the child and family.
Kevin has had over 40 fractures requiring 9 surgeries, including rodding of the femurs, tibia and ulna on both sides. He has had a port placed inside his body so that the veins can be accessed. Until that was removed, it required 42 flushes.
Currently he completed his 22nd pamidronate (biophosphates) treatment with an IV access for a three day duration. This treatment is on going.