Surviving the firsts, (and seconds, thirds, fourths and.....) after the loss of a child with Zellweg

It was Christmas time. I was opening a box of decorations and as I looked in the box there it was, wrapped in paper among all the others. I pulled the paper away and paused when I saw the words “Baby’s 1st Christmas”. My heart sank and the tears fell as my mind reflected on the reality that it was baby’s only Christmas. How were we going to get through the holidays? It’s been 4 years since our sweet son passed away. He was born with a rare disease called Zellweger Syndrome. Our only Christmas with him was spent in the children’s hospital still waiting for a diagnosis. For many people getting through the firsts can be extremely hard; the first birthday, the first Christmas, the first anniver

The GFPD Fall Newsletter

Happy Thanksgiving week everyone! We have mailed out our fall newsletter but it is also available online! View below or click here.

The family of Thomas Thériault honors their son on Pause for PBD

This year, we wanted to do something to honor our son, Thomas, and all the children facing PBD-ZSD. We had great support from our community! I made a short video that explains the symptoms of our son's illness and I went to school and showed it to the entire school. Then, the students had to donate a minimum of $ 5 to walk in honor of Thomas ("On marche pour Thomas"). They successfully raised over $3000 CAD to be awarded to the GFPD. We rewarded the students by giving them bracelets, a coffee cup and a stainless steel water bottle. A journalist from the newspaper "Acadie Nouvelle" was present. So the event was posted in the newspaper as well as on their web page. It was also seen on TV at

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P.O. Box 33238

Tulsa, OK 74153



phone: ‪(405) 418-6061‬

fax: 918-516-0227

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