Can Do Attitude
By Kevin Clark
October 3, 2018
Daily life can be challenging for families living with Tyrosinemia. The rare genetic disorder prevents the affected person’s body from breaking down the amino acid tyrosine, one of the building blocks of most proteins.
For those coping with the condition, it can be an isolating and scary experience, “We were terrified. We didn’t know where to turn,” says Lisa Gleason, whose son Vincent is living with condition. “The resources that were available seven plus years ago, were low.”
One of the biggest challenges for those dealing with Tyrosinemia is the restrictive diet – food choices are very limited, with most proteins off the menu. The dietary restrictions can be awkward and frustrating, especially when dining with others. “You want to experience new things and try new food,” says Imran Mehter, 25, who has dealt with Tyrosinemia most of his life. “I love cheese! You know I could tell you all kinds of cheeses, all kinds of chicken, all the things I shouldn’t eat. But at the end of the day, you are what you eat.”
For eight-year-old Claire Holland, getting the right nutrition means drinking a special formula to supplement her low-protein diet. The daily meal prep was challenging for the Holland family at first, but Claire’s dad, Rob, says they’ve learned how to manage it together.
“We make her special eggs. She’ll help with the ingredients and mix it or whatever. She’s hands-on in that aspect. Her personality is a godsend. She has a very positive outlook. She’s never down on herself about not being able to eat what her sister or brother are eating.”
Many families living with Tyrosinemia recently attended a family camp weekend at Victory Junction, facilitated through a new partnership with NOTA, The Network of Tyrosinemia Advocates. Victory Junction gives these families a place where their children can meet kids like them and play together in a safe environment.
Lisa Gleason likes how Victory Junction helps foster friendships that reach across the country. “We call everyone with HT1, the new and the old, we say we’re cousins. We’re all in it together. Because like I said, it’s isolating.” Normally a helicopter mom, Lisa appreciates the safety.
“I’m always, ‘Where is he? Where is he? Where is he?’ I’ve done it a couple of times today, but not so much because I feel comfortable with the structure of it.”
For the Hollands, Victory Junction has given them the chance to interact with other parents, share tips and ideas, and relate with others living with the same issues on a daily basis. They also appreciate that their daughter Claire had the chance to reunite with old friends, while also making new ones. “We were thrilled that we could come out and get these kids together. And the parents too!” adds Shannon. “But the kids together, they realized that, Hey! All these kids have the same thing as I have. They can relate to each other. To be able to form these friendships, and hopefully if we do this again or if there’s other things that we can get the kids together they’ll just have that lifetime friendship and support.”
“It’s been very positive. She’s gonna have so many good memories,”- Shannon Holland
