K3VIN_G and Osteogenesis Imperfecta

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. 

Along with the emotional and physical pain and heartaches, families often also face financial difficulties in providing the necessary care and the constant quest to improve the quality of life. It is a journey with daily uphill battles that has no end.

We are asking for your support to help us start a foundation that can provide some much needed relief for those affected by this cruel disease.