Osteogenesis Book for Parents
Donation protected
Hello everyone. My name is Nicole Contini. In September of last year, when my son was 10 months old, he was diagnosed with Osteogenesis Imperfecta, or Brittle Bones disease.
Please follow this link to learn more about Osteogenesis:
http://www.oif.org/site/PageServer?pagename=AOI_Facts
With this very rare condition, Leonardo has gone on to suffer three long bone fractures in the past 6 months. At 16 months he has learned to walk, fractured and is now relearning to walk. I'm tempted to put him in a bubble to protect him, but even that wouldn't help. See, with Osteogenesis, breaks are impossible to predict. He might tumble off the couch and be fine, but turn over in his sleep and break his leg. This is such a rare disease and there’s no handbook that tells you how to raise a child with Osteogenesis, but I think there could be something just as useful.
With your support, I will gather stories from across America from families living with OI. I will interview parents about the challenges they’ve had to overcome and how they have come to raise independent, happy children. Additionally, I will interview doctors, therapists and child care specialists for their opinions as well. We can’t prevent our children from breaking bones, but together, by sharing our stories and making them available, I believe we can find a way to make their spirits unbreakable.
As a professional, I have been an English teacher since 2005 and a school coordinator since 2012. I have produced literature programs and creative writing programs for children and teens while working on my masters in literature.
As the mother of a child with Osteogenesis, I recently had to leave my full time employment. We have many doctors visits, from regular exams to trips to the hospital for fractures. Additionally, Leo is hospitalized for three days every two to three months while receiving treatment to help slow the rate of fractures. I am unable to fund this project on my own. I need your help to: perform in depth interviews with many families and medical professionals from across The United States, compile the information into useful, digestable stories, and publish this book so that it can be made available to other parents facing the same challenges we are.
Please, donate today and help make the lives of those living with this disease a little less uncertain and a little more manageable.
With our eternal gratitude,
Nicole and the Contini Family
Please follow this link to learn more about Osteogenesis:
http://www.oif.org/site/PageServer?pagename=AOI_Facts
With this very rare condition, Leonardo has gone on to suffer three long bone fractures in the past 6 months. At 16 months he has learned to walk, fractured and is now relearning to walk. I'm tempted to put him in a bubble to protect him, but even that wouldn't help. See, with Osteogenesis, breaks are impossible to predict. He might tumble off the couch and be fine, but turn over in his sleep and break his leg. This is such a rare disease and there’s no handbook that tells you how to raise a child with Osteogenesis, but I think there could be something just as useful.
With your support, I will gather stories from across America from families living with OI. I will interview parents about the challenges they’ve had to overcome and how they have come to raise independent, happy children. Additionally, I will interview doctors, therapists and child care specialists for their opinions as well. We can’t prevent our children from breaking bones, but together, by sharing our stories and making them available, I believe we can find a way to make their spirits unbreakable.
As a professional, I have been an English teacher since 2005 and a school coordinator since 2012. I have produced literature programs and creative writing programs for children and teens while working on my masters in literature.
As the mother of a child with Osteogenesis, I recently had to leave my full time employment. We have many doctors visits, from regular exams to trips to the hospital for fractures. Additionally, Leo is hospitalized for three days every two to three months while receiving treatment to help slow the rate of fractures. I am unable to fund this project on my own. I need your help to: perform in depth interviews with many families and medical professionals from across The United States, compile the information into useful, digestable stories, and publish this book so that it can be made available to other parents facing the same challenges we are.
Please, donate today and help make the lives of those living with this disease a little less uncertain and a little more manageable.
With our eternal gratitude,
Nicole and the Contini Family
Organizer
Nicole Stivaletta Contini
Organizer
Franklin, MA