My name is Scott and I'm Sarah's Dad. I wanted to report some great news from our great city! This 2003 Bobby-Sox Softball Season, Sarah played the whole summer!

Sarah was diagnosed with MAS at the age of three. She is now seven years old. She is affected with birthmarks, endocrine and skeletal issues by MAS. Sarah is part of the National Institutes of Health (NIH) National Study on MAS. Sarah's mom (Gina) and the rest of our family travel with Sarah annually to participate in the study. This past February, we were very concerned when Dr. Collins reviewed her most recent leg x-rays with us. Sarah's right hip has a fracture that is visible on the x-ray. Dr. Collins remarked that Sarah�s ability to remain mobile with very little signs of pain was remarkable. We believed that she might need surgery on her hip. We returned home and made an appointment with our local Shriner's Hospital to research the possible surgery options.

There was a new turning point for us when we were attending a softball game of our other daughter (Alexandra). Sarah was watching from the stands like she had been doing for years. Someone asked Sarah if she was going to play and be as good as her older sister. She said she couldn't because her leg bones might break. She quietly turned to Gina and I and asked if she could be on a team and play like her sister and brother were. You'd really have to see Sarah in person to get the full effect of her sweet face and piercing blue eyes. Her smile lights up a room and warms the hearts of all those around her. We told her we would try to make it happen.

After speaking with our local physicians, surgeons and many prayers, we made our decision. The purpose of this writing is to share our prospective of trying to maintain a reasonable balance of medical decision-making and the quality of life for our child. We simply concluded that if we had the chance to give Sarah at least one season, in a team uniform we would do it. We spoke to her coaches, one of which was the father of Sarah's dear friend. Sarah would not only play, but also share the experience with her friend. There was another benefit to the coaches we had. They all agreed that Sarah would play only as long as her legs did not hurt. No exceptions, no problems. There were a few games that Sarah's hips began to hurt so she told her coaches, who signaled us. On more than one occasion, Sarah came in from the outfield, only to sit a few innings, and return to pitch from the mound. Sarah's skills were fun to watch grow throughout the season. She was a good little fielder, pitcher and hitter. Her team spirit was apparent to all the fans and players. Even if her team was losing it was not unusual to see Sarah bring up the spirits of her team. We are so proud of Sarah for wanting to live her life to the fullest. I understand why her first team ever was called the Leprechauns. They bring luck to everyone who believes in them!

Thank you all, for all you are doing for Sarah, and children like her.

Sincerely,
Scott & Gina

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