Louie Jo Bichell, Terry Jo’s son, acts like a normal teenager. He stares at his tablet for hours and is often unable to speak. Louie, 19, doesn’t speak or maintain eye contact. Louie’s gestures are slow and jerky. He needs assistance in daily activities such as bathing and shaving. He must also sleep in an enclosed bed.
Louie has Angelman syndrome. This rare neuro-genetic disorder affects approximately one in every 12,000 babies. This condition is caused due to a genetic glitch on chromosome 15. Louie is fortunate in one way: His mother has tried to heal him all his life.
“My feelings about my son did not change after he was diagnosed. He was my sweet little Louie.” Terry Jo Bichell and Louie at their Nashville home
Terry Jo, 38 years old, was pregnant with her son in 1998. Her husband, David, a pediatric cardiac surgeon, didn’t think anything was wrong. Terry Jo, a midwife, had experienced two miscarriages shortly after giving birth to her daughters. However, the results of her amniocentesis had returned normal.
Terry Jo says that Louie was born on February 26, 1999. He was “crying, healthy and pink,” and is now “fantastic.” Her little boy grew up to be happy and smiley, as well as laughing easily. He was not able to breastfeed and was very sleepy. He began to miss milestones such as crawling, sitting up, and talking.
After being referred by their pediatrician, Louie was diagnosed with cerebral palsy. However, Terry Jo and David suspect that Louie may have Angelman syndrome. They read about the condition and looked at photos of children with it in a medical textbook. After additional evaluations and tests, Louie was officially diagnosed at fourteen months.
David said, “I was totally torn apart.” Terry Jo, however, had a different reaction. Terry Jo says, “Finally we knew what was going on, and I had a direction.”
Terry Jo was able to attend the first ever world conference of International Angelman Syndrome Organization, Finland three weeks later. Scientists were looking for innovative ways to reverse the condition. Terry Jo was optimistic that Angelman syndrome would be treated soon and so she and David started holding fundraisers at their home to support their research.
Terry Jo became more connected to other Angelman parents and felt a sense of urgency regarding the research needed. She also became frustrated at not being able to do the work. She says, “I had to convince scientists to do the studies I believed showed the greatest promise.” Terry Jo knew there was only one way to solve the problem: Terry Jo would be a scientist.
Terry Jo entered Vanderbilt University’s Brain Institute Neuroscience Graduate Program in 2009. This was three years after her family had moved to Nashville. However, the learning curve was steep. She says, “I was almost 50 years old with no science background.”
“I decided that Louie needed me to be a scientist.” — Terry Jo Bichell
After two years of her lab studies, her principal investigator quit. She was forced to start again with a new project in a different lab. She had to keep looking into Louie’s eyes when she thought of quitting.
Terry Jo was also making significant contributions to her field. She co-authored a 2015 study linking Angelman syndrome to a slowdown of the body’s circadian rhythm, or internal clock. Scientists would know right away whether a treatment is feasible if the circadian rhythm improves. If it doesn’t, it won’t. Pharmaceutical companies would not have to spend millions on chasing dead ends for many years. This might give them more incentive to try new drugs.
Terry Jo received her doctorate in 2016 at the age 56. After a decade of unpaid consulting, research and fundraising for Angelman groups, Terry Jo was appointed director and scientific officer at the Angelman Biomarkers and Outcome Measures Alliance (or A-BOM).
This group collaborates with pharmaceutical companies and researchers to bring promising drugs to clinical trials. Terry Jo believes that one or more of these drugs could prove to be life-enhancing, life-changing or even better.
Today’s Angelman toddlers and newborns may have a chance at a normal life. Louie admits that a complete cure is unlikely. She says that even though it is a slight improvement, Louie will still be able learn better and retain more control. “That’s all that I have ever wanted for him.”
The Storm is a Storm!
Stephanie Decker’s home in southern Indiana was struck by a tornado on March 2, 2012. Stephanie instructed her children, Dominic and Reese (both 8 and 5 years old), to go down to the basement. She then wrapped them in blankets and covered their heads with her body. Stephanie’s lower body was trapped beneath bricks and rocks as the walls fell. Then a 20-foot steel beam crashed on her legs.
Stephanie was dizzy from pain and sent Dominic to get help. Soon emergency workers arrived to transport Stephanie to the hospital. The doctors removed both her legs and the children survived. Stephanie Decker and Joe, her husband, started the Stephanie Decker Foundation. This foundation sends children with prosthetics on sports camps.
The organization has supported more than 400 children to date. Stephanie is also a motivational speaker who travels across the country. Stephanie states, “What I did in the tornado didn’t make me heroic.” It makes me a mother who loves her children.
Head of the Class
Giselle RiveraFlores was devastated to learn that Brooklyn would need to go back second grade in 2014. Giselle, an assistant property manager, quit her job to homeschool Brooklyn. Brooklyn was struggling with ADHD and Giselle used an online curriculum to help her.
Brooklyn became more focused, engaged, and enthusiastic about learning in a matter of months. Her grades rose to A’s, and B’s.
Giselle, Brooklyn’s mother, decided to continue the same teaching method to help her children. She founded The Learning Hub in 2015, offering free art, science, and engineering courses at local public libraries.
The Learning Hub started with 22 students and now has classes at 10 public libraries. Brooklyn, 11 years old, has been a teacher’s assistant. She helps her mother with workshops and keeps up with her lessons. Giselle said, “I tell my mother all the time how proud of her.”
Rosie McIntyre grew up with Lamonte, her son. He was an athletic, happy, and loving child. Rosie believed there was a misinterpretation when Lamonte, then 17, was arrested by police in connection to a double homicide that occurred in their Kansas City neighborhood. She says, “I knew that my child was innocent.”
Six months later, Lamonte was sentenced to two life terms by a judge in a case that relied on little evidence. Rosie dedicated her entire life to Lamonte’s release. She made phone calls, wrote letters, and worked as a nurse’s assistant.
Rosie eventually connected with Centurion Ministries. This non-profit organization helps wrongfully imprisoned persons and also has a local attorney. In October 2017, a judge ruled in favor of Lamonte’s conviction and he was released from jail. Lamonte has now been married and plans to open a barbershop.
Rosie says, “God brought back my son to me.” “I want him enjoy every moment of his life that he has lost.”
This story first appeared in Woman’s Day’s December 2018/January 2019, issue.