Written by Roxanne Steele
Growing up in Indiana in the 1970’s and 80’s, I have to admit I never encountered many people who were different. Yes different races and economic factors but not anyone with any real disability.
Written by Karina Lehoux
In December 2008, my Zoé was born, and I found out a few days later that she had semi-lobar holoprosencephaly. As soon as I could, I jumped on my cell (this was before smart phones, just think looking something up in a 1″ x 1″ little screen) to try to find anything I could about HPE. Shortly after that, I had found out there were three types and that was pretty much all I could find. No Facebook group I could find, just a little girl in Europe. For about a year, that is all I could find. As a single mom, hospital stays were long and very lonely).
Written by Josh Timmerman
Growing up, I dreamed of being a race car driver, and when that dream became a reality for me, I knew that I wanted to make a difference and be known as a man and driver who stands for something. In 2006, I met a little boy named Sammy Harley who taught me about having HoPE.
My mom is a pediatric nurse, and Sammy was one of her special patients. After meeting Sammy and being touched by the heartwarming stories of other children with HPE, I offered my race car as a vehicle for helping to raise awareness and inspire HoPE.
In 2012, I joined the board of directors of Families for HoPE, and I currently serve as President of the board of directors. It is my privilege to lead this organization, and I hope I have made a difference in the lives of these incredible HPE families because they have most certainly made a huge difference in mine.
First Annual HoPE Walk ‘N’ Roll festival
Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations.
Deeply committed to raising awareness of holoprosencephaly, a group of HPE families in Arizona are joining together to host an awareness event and fundraising walk on November 9th 2019. The event will be held at Power Ranch Park 4546 E Haven Crest Dr Gilbert, AZ 85297
Written by Pete Lawler
While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last year’s event. 2018 was my second conference. The first was in 2008 when Chloe was a baby, and I learned so much about HPE and about my granddaughter.
Like a lot of families, when we got her diagnosis, even though the doctor told us not to go home and google it, we did. It was scary seeing “the worst”. Then we went to the conference and learned that it isn’t all gloom and doom. I met a young lady that at, I believe, 6 years old told her doctor her name and said, “I have Holoprosencephaly”. I was just learning how to say it and still look it up to spell it.
In 2018 Dorothy and I had the opportunity to attend the conference again. This time it was at Great Wolf Lodge in Mason, Ohio as it will be in 2020. The chance to see families I met in 2008 and to meet new families was too much to miss out on so we loaded up and headed north. I’m sure some of the families got tired of me and my camera. I took hundreds of pictures during the conference. Some of the kids became favorite subjects of mine and if you see the pictures you know why. I think it is the eyes.
Getting the chance to watch these families (mostly the kids) interact was worth more than any registration fee. I got to meet some great people from as far away as Holland. Miss Kate and her family became friends who we still stay in touch with. Unfortunately, Kate and the crew will not be able to attend the 2020 conference, but we look forward to seeing them again in 2022. Last year’s conference gave us the chance again to learn more about these amazing kids (I guess I should say people as some are adults now). The speakers that come are some of the most knowledgeable in the field and give families hope instead of just telling parents how short their life will be.
As I look back through these pictures again, I see children interacting with their siblings and other kids. I see wonderful smiles on faces that can light up a room and make you smile on your worst day. Our children are full of life and have purpose.
At the 2018 conference I also attended as a vendor. I make vinyl decals and through my decal booth, I met even more of the families and learned some of their stories. While designing decals to fit a specific family, we would talk, and I got the chance to learn about them and their child. I wouldn’t give up that opportunity for anything.
On top of the invited speakers, they had an evening just for them to go, relax and get to know each other more. The guys, well we had an evening to go and see one of the best collections of classic cars I have ever seen and to bond and get to know each other better as well.
The facility has a great pool area where the families got the chance to go and spend time relaxing and be with old and new friends. It’s also right next door to Kings Island Theme Park. Some of the families and a lot of the older kids made a day of it on the rides there.
Overall, the conferences are great experiences for families. There is no better way to learn about Holoprosencephaly than to be in a building with a group of families who are going through the same thing as you. I am so looking forward to attending in 2020. While I’m thinking about it, I want to say thank you to everyone who had a part in all the past conferences and for those who are working so hard already for the 2020 event.