Family 

By Pamela Tucker

For my family, the Families for HoPE conference is a time in which we are able to bond and connect with others who know the challenges in raising a child with HPE. Although we are blessed to have a supportive family and close group of friends, it’s very hard for most people to understand our reality. The few days, every two years that we get to spend with our “HoPE family” are something that we always cherish and look forward to. The comfort I find in sitting at a table or snuggled up on a couch with other moms and their children are times that I will never forget. It’s an easy, safe, open environment in which you don’t feel judged or feel like you are an outsider. You feel accepted, loved, cared for. It’s impossible to not feel the hope in the air. For our family taking a yearly vacation with a medically complex child is just not feasible.

The conference gives us a chance to have a real vacation which includes our daughter and activities catered around her and her needs. It’s a time we truly treasure and also a time that allows me as a mother to feel rejuvenated and gives my spirit a lift.

You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.