Home Sweet Home

I will keep my writing short and sweet tonight and let the photos speak for themselves.  Needless to say we could not be any happier to all be home together!

We are so incredibly grateful for Dr. William & Stuart Mackenzie and all of the other wonderful doctors, nurses, and staff at Nemours Children’s Hospital for once again taking such wonderful care of Robert.  While our visits to Nemours are filled with pain and heartache, they are also filled with an immense sense of hope and possibility for Robert.  We’ll see you again in just less than 6 weeks to get this cast off!

Thank you for Rooting for Robert!  And in honor of Rare Disease Day tomorrow I thought I’d share a few stats on just how many others across the world are suffering from a rare disease …

  • 300 million people are living with a rare disease worldwide
  • Over 7, 000 rare diseases
  • Of these rare disease, only 5% have treatments
  • 50% of rare disease patients are children
  • 72% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood

Please keep all of these families struggling with a rare disease in your thoughts and prayers.

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