An Indiana family traveled to Florida to take their disabled son to Disney World. The family was looking forward to enjoying their son’s Make A Wish trip. Unfortunately, their trip turned out to be frustrating when they checked in with the TSA on their return flight.
The Carters travel with a large amount of medical equipment to ensure the safety of their 5-year-old son Easton. He’s spent the majority of his life in the hospital, so this trip was really special for him.
Easton was born five weeks premature. He has a genetic disorder called Cri du Chat or Cat’s Cry Syndrome. Cri-du-chat syndrome, is distinguished by a high-pitched cat-like cry.
The symptoms also include distinctive craniofacial features such as a round face, microcephaly (a smaller than average head circumference) hypertelorism, (an increased distance between the orbits, with true lateral displacement of the orbits) micrognathia, (a smaller than average mandible),, and severe intellectual disability. Cri-du-chat syndrome affects one in every 15,000-45,000 live births and is characterized by variable-size deletions of the terminal region of chromosome 5’s short arm.
Easton also has epilepsy, and autism and he spent two years on a ventilator due to respiratory failure. Easton’s mother said their trip was great until they took the plane back to Indiana. “I said I had a letter of medical necessity for my son that we had a lot of medical equipment and things like that,” Carter recalled.
A medical stroller is one piece of Easton’s equipment. It looks like a typical stroller but functions as a more comfortable wheelchair for children. To make things easier for the family when travelling through TSA screening, the Orlando Sanford International Airport labeled it as a wheelchair. She also had a letter from her son’s physician stating that he must be in the stroller for his own protection. However, Carter says that the TSA agent informed her that it wouldn’t be possible for Easton to remain in his stroller. “He said we don’t go by the tags, we gage that ourselves and decide who is going to stay in it or stay out,” explained Carter.
Not only did her husband have to take Easton through a metal detector, but Carter says it took a supervisor about 45 minutes to inspect the stroller, so her son was sitting on the floor while the TSA went through their bags, and she nearly missed her flight.
Carter wants these agents to be held accountable and to receive better training, and she hopes that sharing her experience may prevent this from happening to another family.
Everyone should be able to travel on an airplane. People with disabilities miss out on events, vacations, and even medical care because of the lack of accessible air travel. However, flying remains inaccessible for many people with disabilities.
Sources:
Carter, Melissa T., et al. ‘Phenotypic Delineation of Emanuel Syndrome (Supernumerary Derivative 22 Syndrome): Clinical Features of 63 Individuals’. American Journal of Medical Genetics Part A, vol. 149A, no. 8, John Wiley & Sons, Ltd, Aug. 2009, pp. 1712–1721, https://doi.org10.1002/ajmg.a.32957.
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