Sunday, March 1, 2015
My Son Cade has Osteogenesis Imperfecta (Brittle Bone Disease). This disease is a result of a random mutation when he was developing in one of his Collagen genes which codes the protein for bone Collagen, resulting in random yet frequent fractures (19 to date including 8 femur fractures).
I titled this post "My Muse" because that is exactly what my son is to me and hundreds of others. Having a child with a rare disease has been both a trying and life changing experience. The lessons of grit, patience, hope, faith, endurance, the power of community etc. have all been realized through our heroic son battling his disease.
The timing of this is poignant since Cade returned home from the hospital 2 days ago after getting new titanium rods inserted into both of his femurs. When you spend time at Shriners Hospital you see lots of kids with rare diseases which adds perspective to the challenges you may be going through. Parents and children are not alone in there battles to slay these dragons.
When Cade was 3 weeks old I was changing his diaper and heard a loud pop. Upon examination at the ER, X-rays revealed that his femur was broken. CPS and The Police were called which resulted in a brutal 2 weeks of getting cleared for child abuse - We had no idea what OI was. 2 weeks later we were putting him in his car seat and his other femur broke - something was wrong! We sent his blood to the Univ of Washington Collagen lab and the mutation was mapped and identified as OI.
We were then referred to Shriners Hospital for Children in Sacramento and brought into a network of the most amazing group of specialists and care workers available.
Cade is the toughest, strongest and most inspiring person I know. These children come with a reserve of strength and spirit that the rest of us just do not posess! He never complains, he always focuses on things he can do as opposed to the things he cannot do. Always smiling, always laughing!
What can we do? We can donate to causes investing in research and care of children with rare diseases. We can donate to Shriners Hospital or any other Children's Hospital. We can raise awareness by participating in fund raisers and using social media to raise awareness.
In addition, we can build a network of parents and caregivers and with our collective Synergy, find cures and help each other cope and thrive.
My Muse has taught me every life lesson that I could not learn on my own. I would take Cade's OI from him if I could, but the life's lessons we have learned, both physical and spiritual from this are considered blessings and will be treasured forever.
To all those suffering from rare diseases, stay strong and
I pray for our collective victory and our triumph!