Esquimalt family strives to fulfill young daughter's final birthday wish to cure ultra-rare disease
ESQUIMALT -- Felix is leaning over the table in his living room with a pen in hand. The nine-year-old is drawing plans for the perfect present for his little sister Lexi. "I'm going to make a time machine," Felix says. "And go back in time."
If he – and his mom Cheryl-Lynn, who's watching him draw – could travel back seven years, they'd arrive the same day that Lexi did.
Seeing as the time-machine isn't ready yet, they show me video of a younger Felix cradling the newborn Lexi. "I'm proud of you!" he says, smiling at his sister. Since then, Felix has been her biggest fan and Lexi had been her brother's greatest admirer.
They also show me a video of little Lexi singing and wiggling enthusiastically in the kitchen after finding out what she was having for dinner. Apparently noodles are a meal worth dancing about.
"[She was] so full of spirit," Cheryl-Lynn says. "You couldn't help but want to be a part of what she was doing."
Lexi demonstrated that when she started going to school at the same time her mom began her Masters. They both revealed to each other that they were scared about embarking upon the unknown. When Cheryl-Lynn returned home after her first day, Lexi offered her an unexpected present, papers filled with positive paintings. "[Lexi] had gotten all the friends in her class to make pictures for me," Cheryl-Lynn says. "To show they were all standing behind me."
If Felix's time-machine could take us back a few months, we'd find Lexi recording a video for Santa Claus. The six-year-old would be looking directly into the camera, with an infectious smile, asking Santa to not bring her a present. "It's good for you to take a break," Lexi says. "So you can relax!"
You see – Lexi only wanted one thing for Christmas. The same thing she asked for her birthday today – a cure for the ultra-rare Blau Syndrome. It caused Lexi to experience debilitating, painful inflammation in her organs, eyes, and joints.
"She couldn't walk without steroids," Cheryl-Lynn explains. "She couldn't use her joints without steroids."
There are only a couple hundred people in the whole world who reportedly have the syndrome. Cheryl-Lynn says there's probably more, but it's difficult to diagnose.
There's no real funding, no real research and no real way to stop Felix. "I'm making a time machine," the boy says. " So I can go back in time and bring her back to life."
Lexi died on October 16th, suddenly and unexpectedly. Yet, Felix is still striving to find a cure.
"I said, 'Felix, you know this won't bring her back.'" Cheryl-Lynn recalls, fighting back tears. "And he said, 'I know Mom. But there's other people out there who have this and we can't let anybody else go through this."
So instead of isolating themselves with grief on Lexi's birthday, her family is choosing to be inspired by her selflessness. They've established the Cure Blau Syndrome Foundation as Lexi's legacy. They're striving to create a community to support and advocate for others.
Cheryl-Lynn says there is hope because Blau Syndrome is an ideal candidate for genetic therapy, which is starting to be used to treat other diseases.
"[Lexi's] story could be somebody's happy ending," Cheryl-Lynn says through tears. "We really do believe in the power that we can all make a difference."
The last place Felix's time-machine takes us in this story is their living room where Lexi is sitting by the piano, holding a stuffed animal, and singing a song from the musical, Annie. "The sun will come out tomorrow," Lexi sings, in what now seems like the soundtrack of her hope for a cure.
"It's only a day away!"