Ralph and his mom were taking a little walk around the forest. Ralph hadn’t been feeling well lately but with the help of his doctors and the nurses that came to his house to help him and his mom, he was able to be out of the hospital for at least a little while.
As they walked down the forest path, Ralph’s mom kept stopping to point out special little things. Did he see that neat red toadstool? Oh look at how the sun was coming through the leaves making it look like the tree was glowing! Just then a butterfly flitted by them and Ralph’s mom asked him if she had ever told him the story of the butterfly. She hadn’t.
“A long time ago, there lived a badger in a forest a lot like this one. The badger prayed about a lot of different things but wasn’t sure if his prayers were being heard. He asked his friends and family ‘how do you know if your prayers are being heard?’ None of them could answer his question. Finally, he went to the wisest being in the forest, the Old Oak Tree. ‘Oh great Tree, how do I know if my prayers are being heard?’ The tree didn’t answer at first, and then said slowly, ‘Look for the butterflies. Butterflies are beings of light and color. They are messengers for the heavens. When you see them you are filled with wonder and joy- that is how you know they come from the light. When you see a butterfly you know your prayers have been heard.’ The badger went home content, and whenever he wondered if he was being heard, he looked for the butterflies.”
Ralph thought about this. He wondered if his prayers were being heard? Especially since he couldn’t say his prayers out load. His mom echoed his thoughts, “Sometimes I wonder if my prayers are being heard--”
Just then they turned into the meadow and as they cleared the trees and came into the sun butterflies burst into the air all around them.
Ralph’s mom gasped with joy and sat down next to his chair. She put out her paw and a butterfly landed on her.
She smiled up at Ralph. “I guess we are being heard after all!”
Ralph smiled and looked around in wonder. It looked like every single one of his prayers had been heard. Hundreds of butterflies flitted about. He noticed how a lot of butterflies were flying around his mom, and his smile got even bigger. The prayers for his mom had been heard too.
After a while, Ralph and his mom left the meadow and headed home. Ralph was still smiling, because now he knew that no matter what happened, or how big or small his voice was, he was being heard. And that filled him with such joy! More about Ralph: Ralph represents a lot of children with complex issues. However, since Awareness Critters is about bringing awareness to Rare issues, we wanted to highlight Dravet Syndrome, which can easily fit with Ralph, is also known as Severe Myoclonic Epilepsy of Infancy (SMEI). This form of epilepsy starts in infancy and is catastrophic and life long. Issues that are commonly associated with this syndrome are (List taken from Dravet Foundation): -Prolonged seizures -Frequent seizures -Behavioral and developmental delays -Movement and balance issues -Orthopedic conditions -Delayed language and speech issues -Growth and nutrition issues -Sleeping difficulties -Chronic infections -Sensory integration disorders -Disruptions of the autonomic nervous system (this regulates such things as your body temperature regulation).
Unfortunately, there are few treatment options available at this time. The Dravet Syndrome Foundation is working toward finding treatments and ultimately a cure, helping support families and caretakers, and educates medical professionals about this rare and catastrophic condition.