Our trip down to TX was uneventful and smooth. Thank you for praying! We had a wonderful time and we all agreed that the best part by far was meeting the other CFC kids and their families and hearing their stories!
One of the first kids we met was a little boy from New Zealand. His mom had been showing him pictures from our Facebook group in preparation for the conference and he had apparently particularly been looking forward to meeting Mary. We were sitting in the lobby when he came up with his mom. His face lit up and he walked over to us saying, “Baby Mary!!” He is such a sweetie with a killer smile.
The sessions of the conference were good and it’s nice to know there are doctors interested in creating care guidelines and researching how CFC effects various systems of the body. Of course, it’s not the same for every kid, but it’s helpful to have an idea what to watch for. Probably just as helpful was talking with other moms about the health issues they have with their children and how they’re managing them.
We’re grateful to my mom for coming along and taking Mary to the room for a nap or out of a session for a break so we could attend everything. The conference was put on by CFC International and we had the privilege of meeting the woman (a mother of a now-25 yr old with CFC) who started it and is just this year stepping down. After its founding, CFC Int worked with a doctor (who we also got to meet) to do genetic testing on a number of kids with the diagnosis to find out what genetic mutations were responsible for CFC. Without that work, it seems unlikely that we would have gotten a diagnosis for much longer than the 2 yrs it took. We’re beyond grateful for their work that was really quite early in the explosion of genetics.
And finally, we got to meet the couple that gives some scholarships for families to come to the conference each year. We were one of the families that received a scholarship this year and we were so grateful! Their daughter has passed away and they do this in honor of her. They came for the whole conference and spent much of their time with some of the older kids with CFC giving them a fun time and giving their parents a break.
They ended the conference by announcing that the next conference, in 2019, will be in Tampa Bay. We hope very much to be there for it and are looking forward to meeting some of our new friends again!