Ten year old old Alejandra’s parents may never have a name for her unique condition.
By the age of 18 months Alejandra, affectionately known as Alej by her parents Carrie and Pablo Felices-Costello and two sisters, had already had two major seizures.
“That’s when we started saying (to doctors) there’s something else going on,” says her mom, Carrie.
But, after many tests and specialist appointments Alej’s doctors found they could not explain what was causing the seizures or give a formal diagnosis, they just had a description of symptoms.
Alej continues to live with a seizure disorder and profound intellectual disability. The family brings her to HSC Winnipeg Children’s Hospital regularly to see a neurologist, along with other specialists to support her as she grows.
“Having access to those specialists is invaluable in terms of getting the care you need when you need it. Because the human body is so complicated no family physician can cover all of the different levels of need,” says Carrie.
Through Alej’s journey Carrie and Pablo have spent a significant amount of time navigating the child health world. Now she brings that experience to her work with families in child health research.
“There are so many wonderful researchers out there that really do care and put so much time and energy into making the world a better place,” says Carrie.
Carrie is part of a group called CHILD-BRIGHT Network where she is the parent mentor and liaison supporting parents and researchers for studies across Canada.
One project she’s working on is studying the benefits of supporting parents with coaching when their child has been referred to a specialist for a medical issue, but they’re waiting to get in to see that specialist.
“The year between knowing that there was something wrong and getting an appointment is a pretty brutal year,” says Carrie.
She feels this support would have helped her and her family if it had been in place as they searched for answers in the early years for Alej. Carrie hopes the study means this coaching program will become a permanent part of health care in Canada.
“I think people don’t often realize that research isn’t just in a lab with medications. Research is also looking at social interventions or family support interventions, or all of these things because the way to change policy and to get these things in place is to research the benefits.”
Carrie is also the Patient Engagement Coordinator at the Children’s Hospital Research Institute of Manitoba. In her role Carrie helps researchers structure their studies with parents, caregivers, and patients in mind, so researchers can find the answers they’re looking for to help patients in the long run.
“I hope this change in moving towards involving patients makes the research more relevant and makes the changes to practice happen more quickly,” says Carrie.
While research hasn’t uncovered a name or cause for Alej’s condition, Carrie believes to her core that health care research has the power to create meaningful change for many children like Alej.
She says, for her family, not having a formal diagnosis has been a blessing,
“Because we don’t know we’re always going to keep pushing, because there’s no ceiling, no knowledge in terms of where she’s going to stop or what she can or can’t do.”
To learn about research programs and how you can get involved with Children’s Hospital Research Institute of Manitoba visit chrim.ca