Stephanie St-Pierre

What do you say about the woman who brought you out of the abyss of abject ignorance and provided you with the shining light of knowledge and information. That is what Stephanie did for Melissa and I.

When we learned that Dylan had Emanuel Syndrome, we had no knowledge to go on other than a copy of a page from a genetics guide that Dylan's geneticist gave us. It did not have much information at all. We had no idea where to turn to. Nobody we spoke with had heard of Emanuel Syndrome let alone give us any advice on what we needed to do.

Then we found http://www.c22c.org. We could not believe that we were finally getting some accurate information on what Dylan had. We were finally able to talk to people who knew what we were going through. We were finally able to provide information to doctors and caregivers. Melissa was able to provide a packet of information to every doctor that we bring Dylan to thanks to the info on C22C. We could not believe how lucky we were to get this information.

My wife emailed the creator of the website, who turned out to be Stephanie St-Pierre. She was this amazingly informed person who would try her best to explain everything she could to us. She would answer all of our questions, no matter how many times she must have answered those same questions from dozens of people before. It wasn't just short yes or no answers to our questions. She would give us these great in depth answers that really helped us at a time when we had no clue what to expect. She was incredibly patient. She never seemed angry or bitter (which was amazing to me as I was very angry and bitter at the time we met her).

It wasn't just us that she helped. We quickly joined the Yahoo Groups dedicated to Emanuel Syndrome and C22C syndromes and we saw that she was constantly on there. She was answering questions from people, congratulating others on their accomplishments, consoling others on their losses. It seemed to us that she never took a break.

While running the C22C website and running the Yahoo Groups, she was also posting to 2 blogs, running a Facebook page for C22C, and running conferences and gatherings for families dealing with C22C issues.

She managed to do all of this unbelievable work while at the same being the parent of Maia, her daughter with Emanuel Syndrome. She also managed to adopt 2 children from China, Jaida and Jaxon. She also works and goes to school.

When the hell does this woman sleep?

She told us how when she had Maia, there was nothing out there. There was no information or groups to help her deal with raising an Emanuel Syndrome child. Most of us having to deal with such a situation would fall into a permanent state of depression or denial. Not Stephanie. She found all the information. She gathered it all together. She used her situation to help others like us.

Stephanie St-Pierre is the heart and soul of the Emanuel Syndrome and C22C community.

Everything she has done for the Emanuel Syndrome and C22C community has made me want to get involved and to help other families dealing with similar situations.

The only bad thing I can say about her is that I couldn't possibly keep up with all of the wonderful things that she does. I just don't think I am capable of doing as much good as her, so she does kind of make me look bad compared to her. ;)

The funny thing is that I am writing so effusively about a person who I have never met in real life. I have only emailed or talked on the phone with her. I am very eager to actually finally meet with Stephanie in real life in a few months.

She is a truly amazing and remarkable woman who I am incredibly grateful for having in our lives. As hard as it may be to raise a child with Emanuel Syndrome, Stephanie and everything that she does has made it a little bit easier...