Imagine not being able to smile, frown, or show surprise. It's a reality for a Saskatoon family whose baby was born with a rare neurological disorder. Now, they're receiving help, one cup of coffee at a time.
15-month-old Ozzie Harms spends many quiet afternoons playing at home with his parents, something they've learned to cherish over the months. Ozzie was born with Moebius Syndrome. It's a rare neurological disorder that leaves those with the condition unable to smile, frown or move their eyes from side to side.
"I was heartbroken," says Laura Harms, Ozzie's mother. "I was thinking of school photographs. He wasn't going to have a smile in his school photos, wasn't going to have a big smile in his wedding photo."
In addition to limited facial expressions, people with Moebius Syndrome also have difficulties sucking and swallowing. Even a slight cold can be serious for Ozzie, since he can't clear out his airways on his own. Eating poses a challenge too.
"We have to be really careful, all of his fluids have to be thickened because if he chokes then it goes into his lungs and he can't clear it," says Laura.
For Ozzie's parents, it's been a learning experience, one they've found can be lonely at times. "We feel very isolated in that he's the only one around."
It's that feeling of isolation the Harms are hoping to overcome by connecting with others. They're planning to attend a Moebius Syndrome conference this summer in Philadelphia. In order to get there, they're receiving some help.
Leven's Coffee in Saskatoon has launched a fundraiser for the Harms, even giving Ozzie his own brew. For every pound of Ozzie Coffee sold, the company is donating $5 to help the Harms get to their conference.
Marie Tupper, the company's owner, says what began as a small effort has snowballed. "People were coming into the store and saying ‘I bought this Ozzie Coffee for a fundraiser and it was really good and I just want to support them some more, can I get more?'"
For the Harms, the support has been overwhelming. At this point it's too soon to know how Moebius Syndrome will affect Ozzie in the long term, or what medical needs he might have. It's why the Harms say connecting with other families going through the same thing will make a world of difference.
"I'm really looking to get the support of other families," says Laura, "and just feel normal because everybody else has the same thing."
About $3000 has been raised so far in the Ozzie Coffee fundraiser. Leven's Coffee aims to bring in another $2000 to help the Harms get to their conference.
Moebius Syndrome Awareness Day is coming up, on January 24.
