Today, we had our first full day at the “Families for HoPE” conference. Families for HoPE is an organization for families affected by HPE (holoprosencephaly – Kennady’s condition)
They offer activities for the siblings and kids with HPE. They offer great information on medical treatment and research for the parents and care givers.
Right after Kennady was born in 2001, we heard of Dr. Max Muenke who was one of the foremost researchers for genetics in HPE. For years, we have looked had his research. Today, we actually saw him speak on the latest genetics testing and findings.
During the middle of his speech he shows this slide with Kennady’s life as an example of a child with the most severe type of HPE and how her face is normal. You can see her brain scan (from several years ago) above her pic. We were honored to be a part.
Several years ago, his team took our DNA and found that Kennady’s condition was a gene mutation (ZIC2) that began with her. This means that we would not pass this on to other children and more importantly that our boys would not pass it on to their kids.
Some other interesting stats about her condition:
- 1 in 250 embryos have HPE (98% of embryos with HPE end with miscarriage and most of these are before 4 weeks of pregnancy)
- 1 in 10,000 live infants have HPE
- 1 in 100,000 live births with HPE to be at least 1 year old
The fact that Kennady is 10 years old with the most severe type of HPE (alobar) is a miracle!
We had some music therapy today, but Kennady wasn’t all that amused by it! She slept most of the afternoon! Ha!
The singers and musicians were phenomenal with the kids!
“this is boring. i want to listen to Toby Mac!”
After the conference today, we headed to the theater and watched Ice Age 4! What a blast. We ate a lot of popcorn and drank too much Coke.
laying out on papa’s big belly
We would like to leave with you this special thought… our toilet was sort of blocked today so I (Robin) and Avery went into the woods to find a stick that we could massage the paper with and cause it to flow properly. I think we will not show a pic if that is alright with you. We are all good and going to bed now.
RV 101 Your not supposed to flush paper down a RV toilet they make special paper and even that really shouldn’t be flushed
Thanks for teaching us that on day 8.
No, Angela, the correct paper really does work. We had a very small portable toilet back in the day, and it worked. HA!
How special that Kenna was part of the presentation by that doctor. Very thankful that you all got to be a part.
I want to see Ice Age 4!!