“When the girls were around twenty-three years old, the fibromas started to appear overnight by the hundreds. And naturally, people stare. Not everyone knows what the condition is. Young children are the best, cause they’ll just joke about the fibromas, or ask outright.”
Ingrid Nagy’s twin daughters, Anina and Alexa Nagy, are very lucky – they are two of few people who look forward to going to work every day. At the Mediated Learning Academy, where the girls both went to school, Anina and Alexa now work with younger children,
helping to teach math and arts & crafts. The school’s students naturally gravitate to them, thanks to the twins’ playful and kind demeanors. Outside of work, Anina and Alexa love to hike with their parents, socialize, travel, and go for bike rides. At age 27, they live happy lives, and with the help and support of their parents, guide others to embrace the same positivity.
But 25 years ago, Ingrid wasn’t sure how to take the news when her two-year-old twins were diagnosed with neurofibromatosis. She had never heard of the genetic disorder before. When the girls were first diagnosed, Ingrid cried for days. But in some ways it was also a relief – the family had been concerned about the girls’ delayed speech development, and with a diagnosis they could begin to properly address any learning and health difficulties.
“It was a mixed bag,” Ingrid admits. “In some ways, I was happy I got those carefree years before the diagnosis. But learning what the girls had helped me to finally focus on making things better for them.”
In many ways, Ingrid felt isolated at first – after all, 25 years ago, NF was talked about much less than it is today. Even many doctors and health specialists, Ingrid found, weren’t always familiar with the disorder. Luckily, with the help of BCNF, Ingrid was able to find resources and, most importantly, friends.
“Meeting other people with NF was, at first, devastating. I cried for days thinking about the ways in which my girls would be affected [by the disorder] down the road. It was very shocking. But then, I started to get used to it. You wrap your head around it. And you focus on the every day and hope for the best.”
“I met amazing people – people who were in the same boat as us. I met my friend Ivan very quickly through BCNF; he was a huge support. Seeing someone with NF who was always so upbeat and full of life was a great experience for the girls. It helps you realize that you can be positive with these challenges, too.”
Of course, raising her twins, Ingrid hit road bumps along the way – as any parent does. Her and her husband’s consistent positivity and strength has kept the family happy and striving, even if in recent years, the increasing numbers of fibromas occurring on the girls’ skin has provided additional hurdles.
Rather than teach her daughters to shy away from situations where they may be asked about their condition, Ingrid takes people’s curiosity as an opportunity to spread the word about NF. “People need to know what it is. It’s helpful to talk to people about it and explain – because next time they see someone with the condition, they can recognize the disorder and understand.”
At a conference once, Ingrid remembers being shown a brass statue meant to represent life with NF. “It was a person wrapped in cloth, in hiding. It broke my heart. That type of living kills your spirit. I want my girls to be brave and live fully – not hide under some cloth. My biggest fear is that they will feel they have to hide.”
“We’ve found a lot of people in this community that are going through this alone. That’s where BCNF has been so amazing – the girls have loved connecting with other young people at the social, and at the Scotia Bank run. They’re looking forward to more events like those in the future.”
Ingrid recalls taking her daughters to Switzerland, where they went shopping and found beautiful bikinis. “I realized I couldn’t over-think these small things, like whether or not to let them wear the bikinis out to the beach. If they want to wear them, then of course I should let them – even if it will show off their condition.”
Through this mentality, she has taught her girls traits and virtues that any mother should hope to impart to their children: self-esteem, openness, and the pursuit of joy.
“The girls love to socialize. We travel. We’ve been to Europe three times. And they love working with children.”
While Ingrid has worked to ensure Anina and Alexa live fulfilling lives, she has experienced frustration at the lack of local treatments available for the disorder. In particular, she’s had great difficulty finding plastic surgeons in BC who will treat patients with NF.
“Research is good, but we also need to find people who are willing to help treat and remove the fibromas. There’s a piece of equipment we need, that I haven’t been able to find in BC. It would make such a big difference to so many people,” she explains.
In a society that places such high value on physical appearance, patients’ quality of life can be vastly improved once cosmetic treatments are made available for the disorder. It is therefore understandable that a mother would search high and low for a centre that will address these physical concerns for her two daughters. And perhaps it is because of the existing stigma around physical ‘defects’ that the girls have found such solace in a local anime community.
“Through a friend, Alexa and Anina started going to these anime gatherings. We’d make elaborate costumes for them to wear. They’d love it. Kids would rush up to them and beg for their photos, and they would come home and say ‘Mom, it was so great! Everyone wanted to get their pictures taken with us!’
When asked for words of advice for parents currently raising children with NF, Ingrid’s amazing energy shines through yet again. “You have to stay social. We have a lot of learn from each other [in this community]. We socialize a lot, we hike, and we bike. We live busy lives. And in many ways I’m very lucky, because my girls have each other throughout all this.
At the end of the day, its Ingrid’s gratitude and strength that has taught the girls to embrace life in the face of difficult challenges. “We’ve been blessed with amazing friends and family. And we have to be grateful – we have to look at all the wonderful things we do have, and the quality of life we have here. And we take it day by day.”