Celebrating National Epilepsy Awareness Month and National Cerebral Palsy (CP) Awareness Month
12-year-old Lorenzo is warm, welcoming and engaging in his own way. Though he is nonverbal, he communicates clearly. He shows interest through his eyes and energy and demonstrates displeasure by pushing an object away or disengaging. He is an extremely happy preteen who still loves to cuddle when he is in the mood and not in pain. Lorenzo lives with his mom, Melecia, and his grandmother, who recently began helping with his care. As a family, they treasure simple moments such as car rides, trips to the mall, watching movies and spending time outdoors. Lorenzo also loves cartoons, for their bright colours and fast movement and riding his adaptive tricycle when the weather allows.
At two months old, Melecia noticed Lorenzo lying in his bassinet, staring steadily at one side. “It didn’t look right,” Melecia recalls, “So I told our family doctor about it. He said to bring Lorenzo to the emergency department if it recurred, which I did.” That moment marked the beginning of a long and unpredictable medical journey. Lorenzo was experiencing difficult-to-control seizures and although medications were introduced, they did not bring meaningful improvement.
Monitoring, testing and sleepless nights turned the hospital into a second home. At The Hospital for Sick Children (SickKids), doctors conducted extensive investigations, including genetic testing. They identified a rare mutation in the KCTN1 gene, a mutation that occurs at conception. Lorenzo was first diagnosed with infantile spasms and later with malignant migrating focal seizures in infancy, a severe and rare form of epilepsy.
For Melecia, the diagnosis felt surreal. During her pregnancy, she did all that she could to stay healthy, and Lorenzo was born full-term. There was a sense of disbelief; surely something could “fix” this. Melecia learned that epilepsy, especially rare genetic epilepsy, rarely follows a straight line. Brain surgery was not an option because seizure activity affected both sides of Lorenzo’s brain. Instead, doctors focused on medication to calm the electrical misfiring. He tried countless treatments, but eventually, he required a complex combination of medications, including pharmaceutical-grade CBD oil and a strict ketogenic diet.
The ketogenic diet demanded exact precision, with every ingredient weighed and every ounce mattered. Melecia followed instructions meticulously, determined to do her part while doctors did theirs. The diet reduced seizure activity for a time, but it also took a toll. Long-term restrictions led to fragile bones from calcium deficiency, leading to the difficult decision to pause the diet and slowly rely on a concoction of medications. Like much of Lorenzo’s care, treatment required constant re-balancing. Now entering adolescence, Lorenzo’s seizures are changing again. Hormonal shifts have increased their frequency, and they look different than before. They are not back-to-back emergencies, but they remain unpredictable.
The impact of uncontrolled seizures in infancy was profound. During critical stages of brain development, repeated seizure activity altered Lorenzo’s developmental path. He was later diagnosed with Level 5 cerebral palsy, cortical visual impairment (CVI) and global developmental delay. Caring for Lorenzo demands constant vigilance as he requires assistance with all daily activities, managed solely by Melecia. Nights can be sleepless as Lorenzo sleeps beside her to monitor if no nurse is available. Every seizure is tracked, and medication is carefully timed. Feeding adds a further layer of complexity as Lorenzo uses both oral feeds and a gastrotomy tube (G-tube). Lorenzo also uses many devices and equipment, including ankle-foot orthoses (AFOs), a manual wheelchair, a stander, a walker and, at one time, a lift.
Melecia attests that she was thankful she did not have to do it alone, especially in their early, confusing days. SickKids connected the family with Grandview Kids, opening the door to vital services such as occupational therapy, physiotherapy and speech-language pathology. Lorenzo is part of the Durham Region Complex Care Program, delivered in partnership between SickKids, Grandview Kids, Lakeridge Health and Ontario Health at Home, Central East. Having appointments organized locally has eased much of the logistical burden and ensures continuity of care with each team member informed at every point of Lorenzo’s journey.
Melecia notes that being able to receive social work services through Grandview Kids has been especially meaningful. “Sometimes just having someone to talk to and being connected with other Grandview Kids parents (with their consent) has been a gamechanger.” Being connected to other Grandview Kids families has provided insight, encouragement and community. “At one point, I was a bus driver and was assigned a route with a Grandview child on the bus. It felt so rewarding knowing that I was taking care of a Grandview friend’s child and confidently caring for them as they were my own.” Through Lorenzo, Melecia learned the need for reciprocity in community, knowing when to give and take assistance.
Still, the weight of caregiving remains heavy, especially when your child is completely dependent due to seizures and profound physical limitations. “You know you’re doing enough, but it’s still never enough,” Melecia reflects. There is always more to research, monitor and manage. Early on in their journey, she made a conscious decision not to lose herself. Shortly after Lorenzo’s diagnosis, she returned to weight training and cardio. What began as physical conditioning became something deeper. “I have to be strong for my son,” she says. “I want him to know that he’ll never outgrow my lap.” As Lorenzo grows, lifting and transferring him safely requires strength. To her surprise, building physical strength also strengthened her mentally. The gym became her outlet, the place where she processed both good and bad news. “I run for me,” she explains, “so that whenever something happens, I know how to handle it.”
Lorenzo’s life is complex, shaped by seizures and significant physical disability. Yet it is also filled with joy through bright cartoons, busy public spaces, fresh air and family connection. As a medical parent, self-care became essential to Melecia, not optional. She encourages other parents to invest in themselves now, building resilience for the years ahead. Physical and mental strength, she believes, create the foundation needed to weather uncertainty.
She lives by this belief: people may give up on you, but you dare not give up on yourself.
