Support, Research and Advocacy for Rare and Special Families

MWS Stories

Australia > Edie

© Mowat-Wilson Syndrome Foundation

© Mowat-Wilson Syndrome Foundation

Edie Joan was born12th September 1984, weighing 8lb12oz, very healthy, large toe deformity right foot. There were various examinations by many doctors, but nothing conclusive at that stage.  As Edie developed she was quite floppy, (low muscle tone) sluggish bowel motions, but a happy baby.  It was not until 6-8months and Edie was not achieving her milestones that more investigations were made and we started therapy programs.  Edie progressed slowly, but happily, starting to have convulsions at age 18months with a urinary tract infection.  Edie had more convulsions and was found to have focal epilepsy but we declined medication as we did not like the effect it had on her.  Fortunately, Edie’s convulsions were not frequent, and by puberty they had stopped altogether.

Edie is now 21, and attends day programs 3 days per week, and goes to supported employment for 2 days, and even earns a small wage, $40.00 per week, which makes good spending money for her.  On her day program, Edie does craft, cooking, hydrotherapy once per week, which she loves, sailing weekly, lunching at the local Club, with a little money for the Poker machines, which she also enjoys.  Edie is the closest thing to an angel on this earth, and we feel so blessed to have her in our lives, there is not a day goes by when we don’t look at each other and think how lucky we are to be entrusted with the care of out special girl.

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