This article contains children’s descriptions of their conditions or those of a sibling, friend, or classmate, either in drawings, writings, videos, or a mixture of all of these.
Stranded in Space
I drew this picture because with Rett Syndrome one of the disabilities is you can’t walk, you can’t function your body the way you want it to. So it’s like you are stranded in space, which is the title of my picture. The orange figure that is outlined in yellow on the far right represents my sister. The shooting stars represent hope. The one comet pointing towards Annie means a cure is coming her way.
James is 8. His younger sister, Annie (age 7), has Rett Syndrome, a severe neurological disorder that has taken away her ability to speak, walk, crawl or use her hands in any way. It has caused her to have seizures, be fed through a G-tube and have scoliosis, osteopenia and a host of other medical issues.
Drawings of a Degenerative Disease
At age 6, Amy did the first self-portrait below. While she was diagnosed with high functioning autism at the time, she was clearly a gifted artist. At this time in her life, Amy was cognitively normal.
Amy was later diagnosed with sporadic early onset Spinocerebellar ataxia, a rare neurodegenerative disease for which there is no cure. At nearly age 11, her IQ is half what it once was, and the atrophy of her brain has clearly affected her dramatically. Her current self-portrait is below.
Riley in Her Own Words
For more information about Cloves Syndrome, visit www.clovessyndrome.org. Riley is currently being featured in an NPR series about rare disease. Visit The Life of Riley to read, view or listen.
Hayden and Friends
“If Hayden could talk…” is something that his three same age siblings often say by filling in the blanks. His friends from his classroom have caught on to this too, as they sometimes play with his siblings during recess when all the kindergarten classes are together. We think he would explain how his day at school goes a little something like this: “As soon as my nurse turns the door knob to enter the classroom, my kindergarten friends take turns at holding the door open, so that she can wheel me in. With the teacher’s direction to put away their activity, my friends greet me with a loud and enthusiastic, “Good morning Hayden!” Then we begin calendar time. It depends on whose job it is that day to help me, but I have a friend that records his/her voice into my big-mack switch. It might be what the weather or the day of the week or whatever I get to participate with that day. When it’s my turn, I’m prompted to answer a question with a tap on my arm and then I push the switch with my elbow to state, “sunny,” but it’s in a friend’s voice and that makes me smile a lot of times. We do other activites and my friends help by getting my crayons and supplies and even put them into my hands with help from my nurse since my hands want to be in a fist. My friends help me play during centers and also during class parties they find ways for me to win games. I love when my friends talk to me, they don’t get mad if I don’t turn to them or smile everytime, they just keep trying and get so excited when I do. I love my friends!”
Hayden’s classmates made the following drawings about how they help Hayden. Enjoy them!