Little Ruby, of York, Pennsylvania, has a debilitating and incurable disease called H-ABC, and she’s confined to a wheelchair. But Ruby has a true friend in another little girl named Abby. And when Ruby got a new motorized wheelchair, she seemed a little frightened of it.
But her friend Abby was there whispering to her words of encouragement, and placing her hand on the bar that would make the chair move.
After Abby took a step back, Ruby took off with a big smile. She had this now, and it looks like she’s got a good friend to face life with from here on out.
This is Ruby and her friend Abbie. This was a moment of pure love and joy, one of of the everyday miracles that are part of our lives caring for a terminally-ill child. My daughter Ruby has leukodystrophy. Leukodystrophies are a family of 50 diseases that affect the brain's white matter, Ruby has a form of leukodystrophy called H-ABC. Because of leukodystrophy, Ruby's brain has trouble sending messages to her body to tell it what to do. Leukodystrophies have no cure, and are eventually fatal, leukodystrophies are rare, affecting 1 in 7000 people. It's not easy for Ruby or our family. But, then, in this moment between Abbie with my daughter Ruby, we are inspired by the power of love and connection. We have been overwhelmed by how this moment has touched millions of people. Lots of people have written to show their support and learn more about Ruby's condition. If you want to help kids like Ruby, we have established the The Rare Ruby Fund to help the doctors, patients and families at "Ruby's hospital" who are working to help kids like Ruby. https://www.crowdrise.com/o/en/campaign/rare-rubys-fund To learn more about leukodysrophy go the www.thecalliopejoyfoundation.org or the www.leukodystrophyfamilyforum.com
Posted by A Rare Ruby on Monday, 2 July 2018
We are sure you enjoyed the above story… watch for more: https://youtu.be/cR6weSs8eQI?t=377
