GEMSS would like to thank Bayla and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!
The pieces of the puzzle started to come together for Bayla and her family after little Bayla tripped and fell on a family camping trip. This resulted in an extensive injury which probably would not have been serious in most children. A plastic surgeon was needed to repair the injury, and he suggested a follow up with her physician because of the extensiveness of the injury and the great elasticity of her skin. The plastic surgeon remembered learning about Ehlers-Danlos Syndrome in medical school but never had seen anybody with it. He felt her symptoms aligned with the diagnosis of Ehlers-Danlos Syndrome. Further investigation with a genetics team confirmed the suspicion and a blood test showed that she had the ‘classic type’ of the syndrome (there are 5 other types). Suddenly, all the bruises that appeared from small events, the significant scarring after cuts, and her overly frail skin made sense with this new diagnosis.
Bayla is a vibrant, fun-loving four year old who her mother describes as “outgoing, sassy, and full of life!” She will soon be starting kindergarten. Plans are underway to make sure the staff knows Bayla’s needs, her symptoms, and her abilities well before the first day of school. Bayla had been in preschool for a short while. However, her mother Kate felt home-school communication needs were so important and her own anxiety was high with this new diagnosis, so Bayla withdrew. Kate notes how important it was to hear every physical complaint Bayla made in a timely way so her medical needs could be addressed. This experience makes Kate a little nervous about kindergarten but she wants to work hard to make sure everyone is on the same page.
Bayla loves to play sports and, with this diagnosis, contact sports pose more of a risk for injury. Though Bayla has to choose sports like swimming that have less direct contact, her family encourages her to explore all that interests her. Bayla and her family take the precautions needed to keep her body free from injury without limiting the exploration of new activities. Bayla’s family wants to make sure she can experience a full and active life. Bayla’s diagnosis also gives her an edge in some areas! She is much more limber and flexible than the average person. Sprains, dislocations, bruising, and skin tears happen often with Bayla.