AMBASSADOR FOR HoPE – Kal-El Wright

Seventeen-year-old Kal-El Wright enjoys many things, including going to school.  “He’s a truly just an amazing kiddo,” says his mom Margie. “He loves going to school, although he cannot read or write. He loves to be read to and to practice writing.” Kal-El has a full schedule while at school. He attends PE where he has an incredible teacher who has made several substitutions/modifications for Kal-El so that he is able to lift weights with his peers.  He attends concert choir and participates in their programs, and he loves being with his peers at lunchtime like any teen.

Outside of school, Kal-El loves listening to music – anything from quiet, sleepy-time music, old country (Big Bad John), new country, and heavy metal. He enjoys a wide range of music. He also enjoys singing, dancing and going to concerts. He has a heart as big as his smile, as becomes evident to anyone fortunate enough to enoy in his presence. Kal-El loves people all the people and randomly picks out the most tough looking ones to give hugs to or start conversations with when we’re out, says Margie.

“While I was pregnant with Kal-El, it was determined by my OB that Kal-El had hydrocephaly,” Margie said.   “She assured us that it was a common thing and scheduled us to meet with a neurosurgeon.”  The doctors then recommended Margie have a C-section. Once Kal-El was born an MRI resulted in his holoprosencephaly diagnosis.  “At that time they diagnosed him with Semi-Lobar Holoprosencephaly and gave us grave hope,” Margie said. “They said that he wouldn’t live and if he did, he wouldn’t have any quality of life, that he would never walk, talk, etc and that he could possibly have seizures.”

Now, when not otherwise active, Kal-El enjoys the company of his family’s 4 dogs- Sarge (13yr old German Shepherd) Saylor (2yr old Boston Terrier) and two Australian Shepherd puppies, Dundee and Moose, that will be a year this summer. The family is training Moose to be Kal-Els service dog but all 3 of the younger pups respond to Kal-El’s seizures in the middle of the night. In addition to canine companions, the Wright’s have several chickens, turkeys and cats outside and one inside rescue cat named Pita. Kal-El loves to be outside, he loves to camp, ride the 4-wheeler and ATV, ride in moms old truck, a ’77 F-150 that Margie’s dad bought her when she was 15.  He also loves to ride motorcycles with three, close family friends who take him for rides, enjoys swimming, going to the beach, or lake, and playing in the snow.

Within the last year, Kal-El has really taken a liking to watching wrestling on TV. Margie believes her son’s interest in wrestling comes from his love of all things “The Rock”. The family owns a collection of the shows that Duane Johnson, a.k.a. “the Rock” appears in.

Kal-El’s sense of humor is expressed often. His dad Scott is a Chicago Bears which gives rise to one of  his favorite jokes- “Hey Dad Bears lose!” For Father’s Day last year, Margie and Kal-El made Scott a mug that says just that.

When upset, Kal-El can exhibit self-injurious behavior and combative behavior towards caregivers, Margie said. “Challenges that we have had with Kal-El have been, after moving back home to Indiana, I had a hard time finding a physician that didn’t just want to tell me the same old thing, that “the next seizure could be his last” and just overmedicate him,” Margie said.  Kal-El has been diagnosed with autism, mild cerebral palsy, gastro-intestinal reflux disease, scoliosis, and temperature irregularities.  He struggles with chronic constipation. His seizures are resistant to medications so his has a Vagus Nerve Stimulator (VSN) implant, a device used to treat seizures when drugs are not effective, and surgery is not possible.

In April this year, the family started attending a new church in their tiny, southern Indiana community and Kal-El was baptized.  “Kal-El has always been a boy of faith,” his mother said. “He prays about everything, and I do mean everything.”

“A few years ago, while driving past a particular cemetery Kal-El said, “look mom, Jesus!”, Margie said. “He pointed into the cemetery.”  When they passed three more cemeteries on our way to town, Margie asked Kal-El if Jesus was there and he said nope at all three. “So on our way back home when we came to the particular cemetery where he told me to look, I asked is this the one and he said yes so we pulled over. We got out to walk around and when he took off running through the cemetery, I asked him what you are doing?  He said, ” playing with Jesus.”  Pointing to additional evidence of  her son’s deep spirituality, Margie said “Kal-El has mentioned my husband’s great Grandma Hazel who passed away 6 years ago.”  “He told us that Hazel misses us.” Margie said, “It’s just amazing. I know there is an amazing plan for him. I just do not know what it is but if he can trust I can too.”