Colton’s Story
Colton John Armengol was born on March 16, 2000, in St. Louis, Missouri. As Colton grew, we knew that his development was not progressing as it should, so when he was three months old, we decided to take him to a world renown pediatric neurologist in NYC and later to the Cleveland Clinic’s Center for Advanced Pediatric Neurology. None of the specialists could diagnose Colton’s exact rare neurological disorder, but treatments began for his conditions, which included: epilepsy, chorea movements, acid reflux, visual impairment, and non-verbalism.
At one year of age, Colton was experiencing such severe acid reflux and lack of weight-gain, we made the decision to get a G-button and undergo a fundoplication procedure. This helped Colton grow while also eliminating the reflux, so we began feeding him and giving him his seizure medications through the G-tube. Not knowing whether Colton’s rare genetic disease was hereditary at that time, we had decided to adopt a child, Ava, in 2001 from Russia.
Around the age of three, doctors were able to learn more about Colton’s condition through further testing and observation, but we still didn’t have a specific single name for his diagnosis. He was diagnosed with the following conditions: grand malignant intractable seizures, encephalopathy, chorea movement disorder, myasthenia gravis without (acute) exacerbation, ptosis eyelid, developmental delay, and an undiagnosed metabolic disorder.
There were many good times with Colton and fond memories of activities and trips we took. When he was 7, we went to Disney World through the Make-A-Wish Foundation. We went again to Orlando to Universal Studios, but traveling was starting to become too difficult for both him and us, so we focused on making his home life the best it could be. Throughout his early childhood, Colton enjoyed riding horses in the therapeutic horseback riding program at Ride On St. Louis. Colton loved to be surrounded by his family and pets, and really loved music therapy sessions at home.
By the time he was 10, I could no longer lift Colton on my own, so we acquired a Hoyer lift. As he grew, caring for him required more modifications to the home and larger mobility equipment, such as a bath chair and wheelchair. At any point in time, he was on 15 medications, including 5 for seizures. Due to his cognitive limitations, he was unable to control his body movements and needed to be repositioned throughout the day for both comfort and to prevent skin breakdown. He also always required a suction machine to be at his side to keep his lungs clear. He needed to be in a stander to bear weight, and he required assistance for bathing and dressing. He used a hospital bed, a wheelchair, a Hoyer lift, a nebulizer, an oxygen monitor, and an airway clearance vest. Colton had multiple orthopedic surgeries, including a hamstring extension and a spinal fusion, which was necessary due to his severe scoliosis.
Around the age of 12, we were able to receive more information about Colton’s condition thanks to the Human Genome Project. Colton’s genetic testing revealed that he suffered a rare GABRB2-associated neurodevelopment disorder. This disorder is characterized by epileptic seizures, development disabilities, and movement disorder. At the time, there were not many known cases around the world, and Colton was the oldest child living with this disorder. There was no available cure and Colton had already lived past his life expectancy of five years.
Colton attended Southview School in St. Louis until he was 21 years old. Colton rode the bus to school but required an aide to be with him at all times in case he needed to be suctioned. Colton graduated from Southview in May 2021, so we began to look for ways to keep Colton involved in the community and socialize with others. Our plan was to have him attend a daycare program for young adults with disabilities, but due to Colton’s detailed care, he was denied entry into all programs in the St. Louis area. We were surprised to learn that there are no places for young adults like Colton to go. Once again, this places another burden on families for in-home care and all the expenses that go along with it.
Through a lot of love, devotion, and extraordinary care provided by his family and the many nurses, doctors, and other caregivers, Colton miraculously lived past the age of 21. Colton passed away on October 26, 2021 with family by his side. We decided to donate some of Colton’s organs so that many others may have life. As we departed the ICU at Mercy Hospital in St. Louis, the entire medical staff and visitors lined the hallway to form a Path of Honor to thank Colton for giving the ultimate gift of life to others.