A North Vancouver family is thanking the owner of a Burnaby restaurant for opening her doors to help their son, who has a rare genetic disorder.
Liana and Andy Martin's son Daniel has Lowe syndrome, a disease so rare, his is the only case in B.C. The family makes biennial trips to international conferences hosted by the Lowe Syndrome Association, but the journeys can be costly. Andy estimates the trips can cost anywhere from $3,000 to $6,000, which puts financial stress on the family.
"We're raising a special needs child. I make reasonably well money, but I'm not fantastically well paid, and neither is my wife," he said.
The Martins attend the conference to get the latest information on Lowe syndrome, but the event also serves as a venue for support because families talk to each other and share experiences of having a loved one with Lowe syndrome. According to Andy, because Lowe syndrome is so rare, many doctors are unfamiliar with the disease, and he and Liana are often the ones educating the doctors, which is also why they need to attend these conferences to stay informed with the latest developments.
According to the Lowe Syndrome Association, the disease is caused by a genetic mutation that affects the kidney, eyes and brain and leads to various mental and physical disabilities. Some typical characteristics are cataracts, glaucoma, seizures, poor muscle development, cognitive delays and severe behaviour problems. Lowe syndrome usually shows up in children that are one year old, but it only seems to affect males. There's no cure, but many symptoms are treatable.
For 19-year-old Daniel, the disease means he is developmentally closer to seven or eight years old, he has glaucoma and he takes medication to slow down kidney failure. He also has an extreme aversion to flying, so intense that the family was nearly kicked off an airplane a couple of years ago.
"He was screaming, pretty much at the top of his lungs, until the plane started mov-ANDY MAR Father ing," Andy said. The screams died down to a low whimper, but Daniel, arms outstretched, was begging other passengers to take him home. "We don't fly anymore with him."
The conference is set for June 2013 in Orlando, Florida, but driving will cost the family considerably more than flying, as it will take longer and they have to stay in hotels along the way. The Martins estimate they need about $5,500 to $6,000 for the trip.
So when Liana posted on Facebook that her family was about to start a fundraising journey, word of their plight caught the attention of Burnaby business owner Poppy Siormanolakis, who runs Romana Pizza and Steak House on Hastings Street.
The Martins have been long-time patrons at Romana, a family-run restaurant in the Heights that has been going strong for nearly four decades.
"She came over to us at the table, because my wife is friends with her on Facebook," Andy said, "and she said, 'Is there anything I can do to help?'"
The two parties talked and Siormanolakis offered to open her restaurant and provide food for a fundraiser, and the Martins have agreed to sell the tickets, with all proceeds going to the family.
When contacted by the NOW, Siormanolakis said that whoever eats in her restaurants starts out as a customer and becomes family.
Siormanolakis was tearing up over the phone when speaking of Daniel's condition.
"I'm very emotional like that, (with) things like that. I see the mother, I see the father how they are struggling," she said.
Siormanolakis explained that the restaurant has held fundraisers before, and it's their way of giving back to a community that has supported the family's business for decades.
"The community gave us a lot. They gave us prosperity, they gave us happiness, they gave us life by coming to our place, because we are a family restaurant. They supported us, they gave us smiles, they gave us happiness, so we are trying to give back," she says.
"I was not even thinking to be in the newspaper. This was something we wanted to do from our hearts. You know, families have problems, some talk about it, some are in the closet."
The Martins were thankful for Siormanolakis' generosity.
"We are blessed to have this family do this for our family," wrote Liana in an email to the NOW.
The Martin family fundraiser will be on Sunday, Nov. 18, from 12: 30 to 3: 30 p.m. Tickets are $25 and include pizza and pasta dishes. To buy a ticket, contact the Martins at 604-250-3776 or 778-3785114.
They won't be selling any at the door as they need to know the headcount ahead of time to prepare enough food. Proceeds go to the family for their trip to the Lowe Syndrome conference.