Through Tracey's web site and a mailing list, additional contacts were made, including Debbie whose daughter had been diagnosed with the childhood form of hypophosphatasia, after a fall she sustained at the age of 17 months.  A very astute x-ray technician picked up on some abnormal results on an x-ray revealing poor bone density and changes in the bone, leading the doctors to believe that she had leukemia.  After much testing, she was diagnosed with hypophosphatasia.  At that time, virtually nothing was known about the disease to her physicians and it was believed that she was the only child that had survived infancy with the disease. 

Debbie found her lifeboat in the form of Tracey's web site and soon found that there were other families going through the same things that their family were going through.  What struck Debbie was the profound lack of information, support and medical liaison.  Also, what about the families who had no access to the internet??  Had it not been for the U.S. web site and advice of Tracey, she wonders where they would be today.

Since that time, Debbie and her daughter were sponsored by Shriners and sent to St. Louis, Missouri, where Debbie received a definitive diagnosis (confirmation of the 1995 diagnosis) and where her daughter received much medical support, information and encouragement.

Debbie was determined that families would be spared the grief and frustration of misdiagnosis, lack of information and support so common to individuals affected with a rare disease.  Fueled by Tracey's accomplishments in the U.S., it was decided that leaflets and a web site devoted to Canadian resources and issues would further enhance the spread of information so vital here in Canada.

We would like to see a major shift in the way Canada handles families diagnosed with rare diseases and we're calling for more involvement from the government and community to help the many families left to their own devices, to research, inform and support themselves in their specific medical conditions.

--Debbie Taillefer