I know a little girl, they call her Spunky Princess, who has had 14 hospitalizations in her short four years of life. She is the cutest thing ever. Kind of reminds every one of the little girl named Boo in the movie Monsters Inc. When she is having her spunky moments, you would never realize how sick she is. But you might notice that she always has a backpack with her. It carries her food pump which is running 24/7 to help keep her alive.
“Mitochondrial disease is a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells and convert the energy of food molecules into the ATP that powers most cell functions.” – Wikipedia
For all that she and her family have had to endure, they are given moments of light in their trials. From visits from sports figures or beauty queens, to therapy dogs and cool cakes, the community is reaching out to help and support.
Here is the Minion cake for her 4th Birthday, celebrated in hospital. This specially cake was donated through Icing Smiles.
From the Icing Smiles Website:
We are Baking a Difference.
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.
Memories have magical powers. Long after the cake is gone, the memories linger – memories of the kindness of a stranger, of the art of the design, of the sweet smells of a special treat, of the smiles and laughs, of a normal childhood experience so often stolen from these children. These memories are why we say, “It is so much more than a cake.”
Before meeting Spunky Princess, I had never heard of mitochondrial disease. I suspect that until reading this post, many of you hadn’t either. Especially scary is point #4 below:
I have learned so much from this family—not only about mitochondrial disease and the daily care needed for a chronic illness, but greater lessons about faith, love, and compassion. It is lessons like these that can change the world.
For more information, visit http://www.mitoaction.org/awareness