Posted in A Mother's Grief

My Story


It is World Awareness Day for Rare Diseases. Vic had Osteogenesis Imperfecta. A very rare and horrible disease. I salute you precious Vic for the incredibly brave battle you fought. I honour your journey.

Always in my heart.

Mommy

Hi, I’m Sierra, and I’m going to explain to you what life is like living with a rare disease called osteogenesis imperfecta, more commonly known as brittle bone disease.

Osteogenesis imperfecta (OI) or Brittle Bone Disease is a complicated, variable and rare disorder. It is estimated that approximately 25,000 to 50,000 people in the U.S. have OI.

Medical characteristics & issues related with OI include:

  • Fractures
  • Bone deformity, and bone pain
  • Short stature.
  • Spine curves.
  • Low Bone Density.
  • Loose joints, ligament laxity and muscle weakness are common.
  • Distinctive features of the skull including late closing fontanels, and head circumference greater than average.
  • Hearing loss may begin in the early 20s and by middle age is present in more than 50% of people with OI.
  • Brittle teeth (called dentinogenesis imperfecta or DI) are seen in 50% of people who have OI
  • Respiratory problems including asthma; may be aggravated by chest wall…

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Author:

I am a sixty something wife,mother, sister, grandmother and friend. I started blogging as a coping mechanism during my beautiful daughter's final journey. Vic was desperately ill for 10 years after a botched back operation. Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child. https://tersiaburger.wordpress.com

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