The Figure of MPS
"The Figure of MPS"
Our Grandson Ryan
20"x16" acrylic on 1.5" deep gallery wrap canvas
This is my reference photo of Grandson Ryan walking his bulldog, Sully, then still a puppy
Our grandson, Ryan, passed away Jul 20th of this year. He was born with a genetic disease called MPS. His specific MPS disease was called Hunter Syndrome. MPS children are all missing a certain enzyme that eliminates dead cells from the body. Thus the dead cells build up in the body's bones and organs, severely limiting their lifespan. These children tend to have very similar facial and body features. Their stature is small (Ryan was 17 years old and was about 4'1" tall), and they have a very limited range of motion in their limbs. Depending on the severity of the disease, some that are severely affected by the disease have such damage to their brain that they never progress beyond infant cognizance skills.
Ryan was moderately affected, so his cognitive functions were pretty much like any other normal child, except that I think Ryan had to work much harder for his wins. He consistently made the honor roll at school and was a computer whiz kid. He loved video games and making YouTube videos about how to play specific video games. His videos are still out there on YouTube. Ryan was loved and cherished by our entire huge family and his dad's firemen buddies and their families. There is something so special about special needs children - they tend to teach us so much and the joy they bring into our lives is immeasurable! To find out more about this disease, visit the
MPS website.
When I came across Black Earth Gallery's call to artists for their upcoming show on the figure called "Go Figure," I knew I had to paint Ryan. I loved this photo with its high contract of light and shadow and thought it was so sweet - just a boy and his puppy. Painting this was my way of honoring him and of calling attention to this awful disease that almost no one knows about except for the families and friends of those afflicted with it. It's so rare, there are only 500 children in all of the US with Hunter Syndrome.
The Go Figure show is a juried show with a deadline of Oct 7th, and I began the painting almost a month ago. I'm primarily an abstract painter, and Ryan's is the first figure I've ever painted. I would love to be juried into this show. I will find out Oct 10th. The show runs Nov 6 - 28, 2014. Black Earth Gallery is in Cedar Rapids, Iowa.
Have you ever heard of MPS or Hunter Syndrome? Have you ever had contact with any children afflicted with a rare disease? Do you have a special needs child?
