Author, Jennifer Norman, her son - Kyle Norman and Victor Lodevico, on the set of Autism Live
Jennifer Norman is a beauty and wellness industry executive-turned-entrepreneur. After receiving her MBA from Georgetown University, she pursued a 20+ year career working for large companies, mid-level indie brands, and small startups.
Ms. Norman recognizes that her life is owed to the kindness and compassion of others. She was adopted into a loving family at the age of two, and she is also the single mom of a boy living with chronic illness and disability. Today, Jennifer has made it her purpose to foster inclusivity and support others with wellness, kindness, inspiration, and trust.
Receiving the Diagnosis
Kyle, Jennifer’s son, was born a typical, healthy baby boy. He developed well and hit all milestones up through the age of two. “Around the middle of October 2008, I was playing with him on a jungle gym at a local park,” Jennifer recalled. “I suddenly heard another child cry out, so I turned to see what happened. When I turned back around, I noticed that Kyle fell from the jungle gym and hit his head on the ground. On the way home, Kyle became listless and started vomiting. I took him to the hospital for a CT scan, but it didn’t show a concussion or anything unusual.”
About a week later, Ms. Norman explained that Kyle started to become increasingly tired throughout the day. He stopped wanting to walk or eat. He started having dizzy spells and severe spastic muscle cramps that would lock up his back and neck. Kyle’s father and Jennifer took him to see some doctors who couldn’t detect any problems. They recommended that we take him to Children’s Hospital Los Angeles (CHLA) for a lumbar puncture, MRI, EEG, and a battery of other tests.
Even though all the results came back normal, Kyle’s condition continued to worsen. His breathing became erratic. Studies were repeated. This time, the MRI scans showed lesions in Kyle’s brain stem, basal ganglia, and other regions.
“It looked like a bomb went off inside his head,” said Jennifer. “Kyle went unconscious and was admitted to the PICU. He was intubated and put on a ventilator. He lost his heartbeat several times and was defibrillated. I thought he was going to die right there in front of me. I was terrified.”
A muscle biopsy was taken from Kyle’s leg and sent for testing to rule out the possibility of a genetic disorder.
“The attending genetics doctor informed us that the combination of lesion patterns in Kyle’s brain coupled with the results of the muscle biopsy indicated a Mitochondrial Disease. However, I remain extremely optimistic about what the future holds. As the saying goes, with love, anything is possible.”
From The Corporate World To Captain Brave Man
The SuperCaptainBraveMan Hardcover Books
Coming from the big corporate world, Jennifer wanted to make a change in people’s lives. Jennifer founded The Human Beauty Movement. She is also the author of the SuperCaptainBraveMan series.
“Going back to work full time in a corporate beauty business setting was difficult,” Jennifer shared. “Beyond being seriously sleep-deprived, I had adopted a whole new set of priorities in life.”
The idea to start writing SuperCaptainBraveMan children’s books was sparked by the creative genius of Kyle’s afternoon nurse, Victor Lodevico. Years ago, he began sketching sweet pictures of Kyle playing, reading, and doing activities that typically-abled kids would do. Then, he would post his sketches on Instagram and tag them with ‘SuperCaptainBraveMan’ – his nickname for Kyle being many superheroes rolled into one.
Kyle’s dad came up with the idea to set Victor’s illustrations to stories. “There were countless times we would be out in public, and kids would be scared when they saw Kyle in his wheelchair with his ventilator, tubes, and wires,” Jennifer stated. “They would whisper to their parents, “What’s wrong with that boy?” The parents would hush the kids, telling them not to stare and not to be rude. We recognized a golden opportunity to help educate parents and kids on various disabilities.”
The first SuperCaptainBraveMan book was released on April 23, 2016, Kyle’s 10th birthday. They currently have seven books in two series, The Adventures of SuperCaptainBraveMan and A Kyle Adventure.
Early Sketches of SuperCaptainBraveMan by Victor Lodevico
The mission of SuperCaptainBraveMan is to demystify the subject of disability so that kids develop more understanding, kindness, and friendship for each other. Jennifer explained that the subjects of neuro disability, physical disability, and chronic illness are not easy for parents or educators to teach. However, their books help start a conversation around autism, Down Syndrome, and diabetes in fun and entertaining stories that kids love. In addition, they hope that the lessons of inclusivity and diversity we offer will help reduce bullying and alienation in school and that kids will grow up to be kinder, more loving adults.
Advice For Parents Of Those With Special Needs
Jennifer and Kyle Norman, Victor Lodevico
When asked if she has any advice for parents of those with special needs in balancing it all, Ms. Norman answered, “What works for me may not work for others, especially when it comes to caring for family members with special needs. However, I can say with certainty that achieving total balance is unhelpful for me to think about. I live my days moment to moment in appreciation for all that is good and right and wonderful in my world.”
Mitochondrial Disease is such a broad designation for various life-threatening illnesses that can be highly unique in presentation from person to person. Because the disease types are so rare and individualistic, research is challenging, and funding is limited. Jennifer encourages everyone to learn about Mitochondrial Disease by visiting the United Mitochondrial Disease Foundation website and donate to the UMDF to help find treatments and cures for those afflicted.
