Brittle Bones

I would love to proudly tout that I was thoughtful enough about my children’s disorder to claim that as the impetus for this trek, but alas, I am an adventurer first and benevolent champion of good causes somewhere farther down the list!  However, while sorting the details and physical demands of this trip, I quickly came to the realization that accomplishing such an feat would be nothing short of spectacular for Liam, a young man who has already endured 30 broken bones and multiple surgeries including a ruptured sternum that very nearly cost him his life on more than one occasion.

Brittle Bone Disease or (Osteogenesis Imperfecta) is a complex and rare disorder. OI, as the docs call it, is hereditary and has no known cure.  It’s caused by mutant gene that affects bone formation and bone strength as well as a host of other organ and connective tissue problems.    Liam’s biological sister Grace also has the disorder.  While she’s had only 10 broken bones so far, she is currently struggling with severe scoliosis from the disorder of which we have just learned will require spinal fusion surgery with rods placed in her back within the next few months .

In 2014 Liam and Grace were both Wishing Star recipients.   Wishing Star is an organization whose sole purpose is to grant children with life threatening or terminal diseases their dreams.  In Orlando, Liam a lego-maniac from birth, got to live out his dream by visiting Legoland and Grace, the biggest animal lover in the world, received the opportunity to swim with Dolphins at Dolphin’s Cove.   We are eternally grateful to Wishing Star for providing such an amazing opportunity for our children.

We are not seeking any donations in paying for the trip itself but Liam would love for you to donate on his behalf to either of these great organizations if you find yourself so able.

Osteogenesis Imperfecta Foundation                   Wishing Star Foundation

OIF-logonew                                            wishing star

 

 

 

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