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Living & Thriving with Hydranencephaly

Learn a little about a few of our kids as written by their parents.
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Brayden (6/30/2008 ~ 11/15/2012)


"Brayden lived a life full of many things he wasn't supposed to do, but he did one specific thing more than the others: smile, smiling was always his favorite! He also loved to eat sweet potatoes for breakfast, lunch and dinner... demanded them, would be a better word. He loved swinging and kicking and his space blanket crinkle sounds. In his spare time he happily accompanied his family on roadtrips and adventures to waterfalls, sandy beaches, and boardwalks along through the forests and swamp lands. When not adventuring, he loved to cuddle with his sisters and watch Disney shows and cartoons or hang in the neighborhood with the other kids. He loved his friends at school and was learning to communicate with them and his family using communication devices. As much as he loved all of these things, he loved hearing babies cry the most - I’m embarrassed to admit, but it was great to hear his belly laughs! He oozed a contagious happiness everywhere he went and his big, bright light is still shining strong through this organization inspired in to existence by his little life."

Grayce (11/19/2013 ~ 8/31/2017)


"Grayce loved all things travel, especially road trips from our trip to Florida to our Make A Wish camper trip to Oregon to meet her great grandparents. She also loved chaos, loud noises, raspberries and being outdoors. She enjoyed her therapies and just hanging out watching Denver Broncos football. And she very much loved meeting her little brother Declan."

Ethan (9/14/2005 ~ )

"Ethan loves watching movies and listening to music: current favorites are the Minions, Alvin and the Chipmunks, Batman and Kidz Bop music. He is a happy and friendly guy with the occasional preteen attitude. Ethan does many of the things the doctors told us he never would. He lets his family know how he is feeling with his facial expressions whether its happy, mad or whatever. He is very opinionated. He even communicates using an eye gaze methodology; even picking a choice or answering yes/no to questions when asked. He even has a system called EagleEyes which allows him to work a computer with his eyes, which also allows him to play video games in true gamer fashion. He is amazing and loves to bring out the "I'm Possible" in impossible every day!"

Johnny (9/13/2011 ~ )

"Johnny has an immense love for life that he shares with everyone around him through his big smile and contagious laughter. He loves exploring the outdoors, bumpy rides in his wheelchair, watching TV, loud music, and spending time with other kids. He’s laid back but also very determined - a perfect combination for living life to the fullest while accomplishing the impossible."

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