Fragile but Feisty “easily broken but unbreakable spirit”

my daughter Renesmee Eika Diagnosed with a Osteogenesis Imperfecta "Brittle Bone Desease" at birth. It is a Genetic disorder characterized by bones that break easily even in the absence of any apparent cause. Result or imperfectly formed bone collagen, a major protein of the body's connective tissue. The collagen is less thab normal or of very poor quality making the bones week causing them to fracture easily.

The best treatment option for the person with OI, is giving them a drug that will low down bone destruction and therefore strengthen the quality of the bones making them less prone to fractures. INFUSION if this drug results in dramatic improvement in functional mobility and marked reduction in fractures and bone pain aming patients with OI.

Renesmee is scheduled to be infuse this april-june 2018 no exact date. She is only 3 montha old so she needs to be room in PICU. Whem she is born 4 fractures with different healing has been found in her lower extremities.