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Stories of NF: Charlie H

By March 28, 2024NF1, Story of NF

Charlie was diagnosed at nine months old through genetic testing. At five weeks old he started showing cafe spots. By the time he was six months old, he had over 30.

Instead of worrying about school or friends, Charlie worries about how many doctors he sees each month, or how whatA child in a hospital bed with an iv stand nearby, wearing a headband and sitting in a meditation pose. procedures he needs to have done. NF has caused tumors to form all over his spine and throughout his body. Charlie has an appendicostomy and a gtube due to the nerves not functioning in his GI system. Charlie also has hearing loss, asthma, vision problems, and tumors in his head, spine from top to bottom and abdomen. He has learning disabilities, speech delay, and fine motor delays. Charlie has over 10+ specialty doctors that monitor him. We spend a lot of time in the hospital with various problems. We are not sure what the future holds when life changes every few months with something new showing up.

Charlie is learning about NF a little bit at a time. He is learning that everyone is made different and our differences make us unique. Unique is not a bad thing, he is learning that our differences make us stronger in different ways.

Charlie loves to play soccer. He is also active in 4H outdoor activities. He likes archery best but also loves robotics and aerospace. He build a small rocket and was able to launch it at NASA. He loves to play Fortnite and Minecraft. He loves hospital bingo and even got to be the host. He also loves to joke around. He is a jokester. He finds humor in challenging situations.Young child posing with fists raised in a display of playful strength.

Favorite Song
Old Town Road

Dream Superpower
To be strong

Favorite Food