Patients with Rare Diseases Build Community through Workshop
Seven-year-old Michael has to watch what he eats very carefully. Not because of weight considerations or because he or his family subscribe to a specific lifestyle choice but because he is living with a rare metabolic disease.
Michael was born with phenylketonuria, better known as PKU. He is missing an enzyme that aids in breaking down one of the building blocks of protein, phenylalanine. If he eats too much protein, phenylalanine accumulates in the body and may cause brain damage as well as other neurological problems.
For Michael, this means high protein foods such as, chicken, pork, beef, cheese, milk or regular pasta and bread, are off the menu. Instead, he follows a strict low protein diet full of fruits, vegetables and meals his mom makes from scratch. Medical supplements give Michael the protein he needs to live healthy and regular blood testing helps keep track and monitor his health.
PKU, like any condition, can be physically, emotionally and socially challenging for the individual who has it and their loved ones. It can also feel isolating as PKU is a rare disorder that isn’t well-known.
Understanding these complexities, Dr. Chitra Prasad, Director of Clinical Metabolic Services at Children’s Hospital, London Health Sciences Centre, started the Metabolic Family Workshop. This year’s two-day event was held in May and featured speakers, age-appropriate programming and a half-day cooking demonstration. More than that, it brought families living with metabolic disorders, such as PKU, together to build support networks and share helpful experiences.
The workshop, now in its 12th year, is unique to Children’s Hospital, with few metabolic clinics in Canada offering family-focused cooking demonstrations or education days. Individuals travel to London from across Southwestern Ontario, including Windsor, Sarnia, Toronto and Kitchener, just to participate.
“It’s three hours away from where we live and we will always drive for it because it’s so important,” shares Michael’s mom, Amanda. “Because it’s a rare disorder, it’s not like you’re going to find that peer or parent support in your neighbourhood – at least it’s less likely for us in rural Ontario. It’s also special to be able to have that face-to-face connection with Michael’s care team. They are all here and they greet us like we’re family.”
Speakers at the workshop encouraged patients and caregivers to stay focused on the positive and offered coping strategies to successfully navigate the challenges of living with a metabolic disorder. Children also received age-specific support during sessions led by Children’s Hospital Art Therapists and Child Life specialists.
Compassion, excitement and community could be felt during the sessions and the mood continued during the following day’s low protein cooking demonstration. Like a reality show come to life, England’s Chef Neil quipped back and forth with Canada’s Chef Patrick as they shared how to make sticky sweet potatoes, zucchini noodles with pasta sauce, special low protein pizza and chocolate “lollies”. Michael and the other children in attendance were happy to get their hands dirty to help make a tasty lunch.
“Michael is old enough that he’s starting to help me in the kitchen so the cooking demonstration was certainly an interest for him,” says Amanda. “It important that he has these opportunities as he’s on the road to independence with his condition.”
Children’s Health Foundation’s is pleased to support this fun, educational workshop. Thank you to our wonderful donors who help make this possible!