“You may often hear or see the phrase “GFPD is family,” and I fully and wholeheartedly support that statement.Our family is united through a rare, devastating disease known as PBD, and it includes more than 540 families throughout 39 countries. We are a varied group comprised of parents, extended family members, friends, doctors, scientists, and researchers.A vital function of family is that it provides support and encouragement, and this is what our GFPD family does. I have said it before, but the GFPD conferences are like a big family reunion, even with families we are meeting for the first time. Our family leaves these conferences with a renewed sense of solidarity and community. With each conference our family grows, and the connections we make continue long after we arrive home.
I am grateful every day that we had the support of our GFPD family from the very beginning, even before Archer’s diagnosis actually. In 2012 I met another mother online named Pamela Marshall, also a mother of boy with PBD-ZSD very similar in age to Archer. I think the devastation of feeling isolated is a close second to the devastation of hearing your child has a terminal disorder. Although sadly we have no control over the latter, the GFPD ensures that no family affected by PBD is alone, as was the case when Pamela reached out to me. Since then, our sense of being a family has only increased as the GFPD has grown in size and, with that, its ability to reach out to new families receiving this diagnosis. Through our online support group, we are able to reach out to one another. Within our support group, families are able to seek out answers to the many questions we all have about this disease.
This was where I first began asking questions about others’ experiences with g-tubes. The parent support group also allows us to support and share each others’ fundraisers, or even attend them physically if we are able. We offer our encouragement when a child is sick in the hospital, or when a family experiences the unthinkable loss of their child to PBD-ZSD. We celebrate each child’s successes, milestones, and birthdays together. It is here we are reminded we are not alone, that there is someone who understands and relates.
Although our “family” is spread far and wide, and we many not see each other often (or at all), this online group ties our family together through the many joys and sorrows of parenting a child with PBD. Family is at the heart of the GFPD. As Archer’s mom I am undoubtedly indebted to the GFPD for bringing us together with other affected families, and ensuring our journey is not traveled in isolation. GFPD IS family!”
-Ashley, Archer’s mom