At 16 years of age, Robin was an accomplished violinist and had just won a major regional competition when she came down with flu symptoms. Severe fatigue and weakness followed, and she could no longer attend school. A year later she was finally diagnosed with AMD.
Robin’s condition continued to deteriorate and just when she was about to give up her violin studies, she was selected by Very Special Arts to perform as a national Panasonic Award winner at the Kennedy Center in Washington, D.C. She took this opportunity to travel to North Carolina and New York to visit specialists recommended by AMDA. Under their guidance, Robin started using a Bi-Pap ventilator at night and went on a special diet and exercise program.
In the following year, Robin gained more than 15 pounds and gradually regained some of her strength. As Robin could no longer commute long distances regularly, she moved 90 miles to live near a university hospital and her music activities.
Today, Robin is finishing high school through a public school home tutor and continuing her musical pursuits. She recently won the honor to perform as a national Yamaha Young Artist. She serves as concertmaster of her orchestra and plays first violin in a string quartet which has performed for President Clinton among numerous other engagements. Robin is planning to go to college and hopefully waiting for the upcoming enzyme replacement therapy.
– Robin’s mother
By: George Fox Wow! That was a long time ago! BUT, luckily, we are still here! Phoenix is now 18 years old, and while we loved him being able to push his chair around the house, he can no longer do that. He actually isn’t really even strong enough to control an...
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