Riding With The Wind

riding-with-the-wind-giclee

16″ x 20″ Watercolor on Paper

Part of the “See What I Can Do!” series of paintings

It was a beautiful day when she was born. A new little girl her parents named Imyjen. Over the next few weeks and months, as the nurse came to visit them in their home near Melbourne, Australia, she noted some of the “normal” milestones you would expect to see in an infant were not happening. Her muscles were stiff, and she didn’t move like most babies do.


It took months before the doctors diagnosed Imyjen with Schwartz-Jampel Syndrome


Imyjen would never walk. She would never talk. But it was clear that she could hear, and at least understand some of what was going on around her. On one occasion, when trying to teach her to press a button to signal “more”, she actually said the word “more”. But that was the only time. She can play with toys and put together pieces of simple toys. She can solve problems. She loves music, and had a small piano keyboard and made up her own “songs”.


Imyjen knows what she wants. One time while at school eating biscuits (that’s cookies for you Americans), her class mates wandered away and she took the biscuits to eat for herself. She certainly knows what tastes good.


One warm Christmas time and end of the school year in Australia when Imyjen was about 8 years old, her school had a horse-riding event to help build posture and communication skills. They strapped her onto the back in a special saddle made for small children. They put a helmet on her head, and had guides to help ensure that she would be safe. It was as if this new experience opened a door for Imyjen. Somehow she managed to communicate the word “Faster”. The wind in her face, the feeling of freedom, the bouncing as the horse trotted along. We don’t know for sure, but it was as if the little girl inside her was able to make an appearance.


In this painting, the I captured the moment, the look of amazement in her face, the wind blowing her hair back, and the big smile. Imyjen can sit on a horse, she can smile, she can feel the freedom of the wind blowing and moving along a trail. Close your eyes and imagine that you are Imyjen, and you are feeling for the first time the amazing feeling of riding on a horse, trotting along and feeling free from the things that limit you. Look at what Imyjen can do!

Schwartz-Jampel Syndrome

Schwartz Jampel syndrome (SJS) is a genetic disorder that affects bone and muscle development. Signs and symptoms may include muscle stiffness and weakness; joint deformities that affect mobility; short stature; small “fixed” facial features; and eye abnormalities. SJS is caused by mutations in the HSPG2 gene. Treatment aims to normalize muscle activity through various methods including massage and stretching, medications such as botulinum toxin, and surgery.
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