North Vancouver Family Heads to Illinois to Find Medical and Emotional Support
NV family heads to Illinois to find medical and emotional support
Erin McPhee, North Shore News
Published: Sunday, April 18, 2010
One can be a lonely number and unfortunately for one North Shore family, it's an all too familiar scenario.
As far as North Vancouver residents Liana and Andy Martin know, their son Daniel is the only child in the province with Lowe Syndrome. Diagnosed shortly after he was born with the rare genetic condition, Liana and Andy have remained committed to giving their son, now 17 and in Grade 11 at Windsor secondary, the best care possible.
According to the Lowe Syndrome Association, based in Plano, Texas, the condition mainly affects boys and causes both physical and mental disabilities as well as a host of other medical challenges.
"It's been a real learning process for us as a family and for the doctors who are treating Daniel because medically there isn't a whole lot of information out there," says Liana.
Over the years, she and Andy have been relying on a virtual parents community, organized through the association, for support. The discussion forum they belong to is called LSA-Talk and is for parents, friends and professionals caring for individuals with Lowe Syndrome around the world.
This summer, the Martins are planning to travel to the association's 12th International Conference on Lowe Syndrome being held in Oak Brook, Illinois, June 25-27. Attending will give them an opportunity to meet with the top doctors and researchers in the field, spend time with other parents whose children share Daniel's diagnosis as well as allow him to interact with his peers.
"It's an amazing experience being able to sit in a room full of families who all share something in common," says Liana. "Here in B.C. it's not something that's readily available to us."
To cover the costs involved, which she estimates will amount to $3,000, they've organized an Ultimate Elvis Fundraising Evening set for Saturday, April 24 at 6 p.m. at the Tsleil-Waututh Cultural Centre.
"Really it's been trial and error as far as treating Daniel and helping him as best we can. The specialists out at B.C. Children's Hospital have been awesome," says Liana, adding her son is followed by a dedicated team of professionals representing a number of different departments.
Daniel's eyes, kidneys and brain are affected by the syndrome. For example, he was born with cataracts and developed glaucoma six years ago. He also has a mild hearing impairment.
He struggles with rheumatoid arthritis, which currently affects his knees and ankles and is beginning to develop in his wrists and fingers. He has fibromatosis, benign growths from his feet to his knees.
Daniel is also developmentally delayed and Liana estimates he's at an age 10 level.
In terms of his mobility, he uses a walker and, due to his eyes, needs to be watched on stairs.
"I look at other boys who have Lowe Syndrome who are far more severely affected by the disorder and really with Daniel we're very fortunate," says Liana.
When Daniel was born the Martins were painted a bleak picture about his future, so far as to suggest he wouldn't reach his first birthday. However, despite the host of challenges Daniel faces on a daily basis, he continues to astound with his progress and positive demeanor. His interests include Hot Wheels cars, swimming, video games, movies, bowling and classic rock and roll music.
"He's into Golden Girls right now," Liana laughs. "It kind of goes through phases. He'll watch the same episode over and over."
Daniel is also committed to the environment, is big on recycling and loves going out into the community to pick up litter. The Martins are also grateful for the support of the Tsleil-Waututh Nation, which they're members of. For example, the Nation chose Daniel to be one of their Olympic torchbearers.
"Just the milestones that Daniel himself has reached I think is what keeps me going," says Liana. "If someone can live with all the challenges that he does and still smile and each morning say, 'I love you' . . . . I've got it easy."
The Martins attended one of the Lowe Syndrome Association's conferences, held in Atlanta, Ga., 10 years ago thanks to the support of North Shore and Lower Mainland service organizations. Their other child, Kayla, 22, who helps them care for Daniel, also attended.
"The benefits of being able to go to such a conference, there isn't any words really to explain what we will get out of (it)," says Liana.
For tickets ($10/$30) to the Ultimate Elvis Fundraising Evening, a family-friendly event featuring eight King impersonators and dinner, or to make a donation, either monetary or in the form of prizes, contact Liana at 604-924-3776 or firstname.lastname@example.org.
For more information on Lowe Syndrome, visit www.lowesyndrome.org."""