MARLEY CONVERS & ALLIE

Marley Convers is a 14 year old who loves to dance. She does ballet, jazz, tap, and hip-hop but is particularly drawn to the expressive nature of contemporary dance. She also does pilates and cardio dance. On the quieter side, she loves to bake sweets and enjoys creative outlets like painting. She is active in her church youth group and enjoys reading devotional and spiritual books. Since the pandemic started, her family has been attending church online but her youth group did have an in-person (outdoor, socially distanced) celebration once they raised all the money for her assistance dog placement! Marley lives with her mother Emily, her stepfather Lowell, and her younger brothers. They share their home with an older rescued Shepherd named Daisy, a bearded dragon named Houdini, and Nibbles the guinea pig.

Marley was born with Dandy-Walker malformation (DWM), a condition characterized by underdevelopment of parts of the brain, primarily the cerebellum, and enlargement of other parts of the brain. In Marley’s case, her DWM began causing seizures when she was a toddler. Marley experiences frequent absence seizures which can progress to become grand mal seizures. During an absence seizure, Marley will freeze in an erect position and stare “like a deer in headlights”. She is completely unresponsive during the seizure, which lasts a few seconds up to a minute. These seizures don’t cluster frequently, but can happen sporadically over a 30-60 minute period. Emily will rub Marley’s triceps, biceps, and back to bring her out of an absence seizure. She also administers CBD oil to prevent and lower the intensity of the seizures. Marley has prescription barbiturate medication to prevent absence seizures from becoming grand mal seizures. Currently Marley is experiencing a few mild absence seizures a week but before school went remote she was regularly having 5-8 absence seizures a day.

Marley’s grand mal seizures happen almost exclusively when she is at school. This could be due to additional stress Marley experiences at school, because the absence seizures are not recognized or treated at school, or for another unknown reason. During a grand mal seizure Marley falls and convulses with her eyes rolled back. Her body becomes extremely rigid and Emily worries that if Marley were in water when one happened, they wouldn’t be able to get her out because of the rigidity. These seizures typically last less than five minutes but Marley has been to the hospital about 15 times in the last couple of years for seizures that lasted longer than five minutes. Marley was having 2-3 grand mal seizures a week in late winter but has not had any since school went remote.

Marley has a shunt placed in her brain to reduce pressure from a cyst, but the shunt was broken in 2018 when Marley fell during a grand mal seizure. An emergency surgery to revise the shunt was not only unsuccessful – the shunt had become part of her brain and removing it would likely cause a deadly brain hemorrhage – but also caused a traumatic brain injury that resulted in a cognitive and behavioral regression to the level of a three year old. Initially Marley needed help with most activities of daily life but she has regained much of that function, with her memory being most significantly impacted still. The broken shunt remains a grave threat to Marley, however, as another fall could damage the shunt further and require removal despite life-threatening risk of hemorrhage. The high levels of medication Marley is on to prevent seizures (and falls) come with significant behavioral and cognitive side-effects, including impacting her memory.

Marley also experiences pressure headaches which are somewhat controlled by medication.