Kenzie Dickinson:
At six months old, Kenzie’s parents felt that she was falling behind developmentally and not reaching her milestones. Their family worked with doctors, specialists, and physical therapists and underwent genetic testing, looking for answers. But before they had a clear picture, Kenzie had a seizure that lasted forty-five minutes. An ambulance transported Kenzie to MaineHealth Barbara Bush Children’s Hospital (BBCH), and she was admitted to the Pediatric Intensive Care Unit.

In the months after that first hospital trip to BBCH, Kenzie was diagnosed with epilepsy, as well as an ultra-rare genetic disorder of the VPS13D gene. She now travels to Boston for regular care, but her father, Kevin, explains that it’s not a matter of if - only when - she will need emergency care at BBCH again.

Seizures and feeding tube issues cause most of Kenzie’s stays at MaineHealth Barbara Bush Children’s Hospital, and she’s often admitted through the Pediatric Emergency Department (ED). Kenzie’s family has an incredibly positive outlook, as Kevin shares, “In all these instances, the level of care at BBCH is bar none. Not only do they take such wonderful care of Kenzie and her needs, but they also make sure the whole family is cared for. This hospital is like a big family, and we couldn’t imagine entrusting anyone else to care for our daughter in an emergency. State-of-the-art, compassionate care, right here in our back yard.”

While not in the hospital or visiting her favorite doctors, Kenzie is a vibrant and vivacious little girl. She loves sports, especially watching her favorite local baseball team, the Portland Sea Dogs, and their mascot, Slugger, who is her “best friend forever.” Kenzie also enjoys music, whether listening or making her own, and loves being outdoors, going to zoos and aquariums, and traveling. Kenzie’s family tries to take as many adventures as possible, unaware of the challenges ahead.

Kenzie’s future, with this genetic disorder and the possible connections to mitochondrial disease, is unknown. Therapies, procedures, and medications continue, but one thing is certain- she will need emergency care again- it is a part of her life. When that time comes, Kevin explains, “We know that BBCH will be waiting for us to keep Kenzie strong and keep her infectious smile and laughter going!”