Reflections on 2019 | Looking ahead to 2020

As 2019 draws to a close, I’m filled with gratitude for our past and present and filled with a sense of hope for our future. Our families are supporting one another in ways that nine years ago, I would have never imagined. Our support groups are robust with empathy, innovative ideas, laughter and sorrow. Our families have built global relationships–supporting one another from afar, and it is truly amazing to witness. Likewise, our scientific community continues to grow. This group of amazing minds truly have compassion for our families in ways that defy understanding. Our Scientific Advisory Board continues to push the boundaries of what is possible with HOPE that one day, the quality

2019 Patient Ambassador - A year with Archer

It is hard to believe 2019 is coming to a close soon. As a new year is around the corner, I reflect on the changes this past year has held for Archer. Perhaps most significantly was his g-tube placement in early January. This was a decision I wrestled with for years, and I can confidently say it has been an enormous blessing, and absolutely the right choice for Archer. He is thriving, and my husband and I keep commenting how heavy he is getting when we pick him up! During Archer’s surgery, his surgeon took images of his abdominal cavity which showed he has a hernia, as well as liver damage due to PBD. Liver dysfunction is common in children with PBD, and we have monitored Archer’s liver fun

A bereaved mom's thoughts on grief during the Holidays.

"Christmas is usually one of my favorite holidays. I am one of ‘those’ parents who would ask if it’s too soon to put up the Christmas tree the day after Halloween. I typically have Christmas music blaring all through the months of November and December and my daughter and I can basically recite every line from Home Alone. This year is different though. It’s two weeks until Christmas and my grandma came over and said she was shocked to see my Christmas tree not up. I finally forced myself to get the tree out but have yet to even begin Christmas shopping. Everything seems unbearably hard and I just can’t force myself to get into the holiday spirit. This will be the first Christmas without my s

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