AMBASSADOR FOR HoPE – Brianna Bixenman in Her Own Words

Hi everyone. My name is Brianna.

I was born with lobar Holoprosencephaly. I am now 28 years old.

My parents weren’t given much hope from some doctors when they found out about my HPE when I was born, but that was before they met one of my doctors who I always call my “guardian angel”. She gave my parents and I a lot of HoPE that I was going to survive from the first day she met me. She told the doctors that she has HoPE for me and to watch me do great things when I grow up!

I have a cleft lip and palate and have had 20 surgeries. I also have some learning disabilities, epilepsy that I developed last year, and a chronic nerve disorder unrelated to HPE. Besides all these diagnoses, I’m still holding onto HoPE! My family has always been there for me since day one. They are my anchor who holds me through my life storms.

So, here is a little more about me:

I love to ride roller coasters any chance I get and I love to travel to other parks with my friends. Roller coasters are everything to me. They are a part of my life story, and I wouldn’t want it any other way.

I love to study weather like severe storms. I love to study tornadoes and other storms on my free time. I also work part time at a daycare, and I’ve been there for 10 years, and I absolutely love it!

I also love to educate anyone who likes to hear about my life story. For instance, I go to physical therapy two times a week. I tell the PT students my story and that I have HPE. They are very interested in my diagnosis, so when I leave PT, they go look up it up and learn more.

Going back at age 16, I began to be interested with my brain disorder. I started researching and having it become a class project of learning about what I have and presenting it to my class. This was way before I started to look for groups on Facebook when I was 18.

I then found an amazing group called Families for HoPE, Inc.  For some reason my heart told me to join this group and I’m so glad I did. I’ve met so many HoPE families at these conferences held every other year.  My HoPE friends that I meet at these conferences are just noting short of miracles! I’ve become so close with them!

At these conferences I’m also able to learn more about my brain disorder so I can raise awareness and educate others because HPE is very rare. I love my HoPE family more than everything and that’s why I’m raising awareness!!