Nikki Foster hopes to travel to Paris next year. But experiencing the French cuisine and culture hasn't even entered her mind.
Foster, 23, is on a mission to save her seven-year-old son, Gavin.
A clinical trial in Paris, involving gene therapy, is showing progress in treating a disease Gavin was recently diagnosed with, adrenoleukodystrophy (ALD). It's considered incurable.
Foster, a St. John's native, became a mom when she was only 15. She and Gavin's dad, Greg Brown, moved to Hamilton, Ont., three years ago so she could go to college.
Foster said Gavin always appeared to be healthy and outgoing. But in June, she noticed something different with his left eye.
"Everyone started to notice his left eye was wandering off, almost like if he was going cross-eyed," Foster said.
His parents took Gavin to a doctor who referred them to an eye specialist. The specialist said his vision seemed fine and didn't investigate further. But around the end of August, Gavin was becoming confused and had started to lose some of his vision. His hearing was also deteriorating. Foster said she took him to the emergency department and, after about eight hours of examinations and testing, a doctor told her a computed tomography (CT) scan detected something was happening to his brain.
The next morning, he was seen by a neurologist who diagnosed Gavin as having ALD.
Foster said she's been told that this is a rare terminal illness which causes slow brain deterioration until the body shuts down.
"As this disease takes a little of my child away each day, it gets harder and harder to communicate with him," she said in a telephone interview this week. "I have to pad my walls and furniture to protect him. He has to sleep on a mattress on his floor."
She said Gavin has almost completely lost his hearing and eyesight.
"Soon after this, the rest of his brain and body will shut down, giving him less than two years to live," Foster said.
"In the past few days, he's started to have muscle spasms and he's in pain. … He's waking up at night and you can tell he's miserable with pain - he's really suffering now."
Foster and Brown still find themselves in denial about their little boy's condition, but "every now and again reality hits when something comes up like the pain he's in now and we just break down," Foster said. "But we're just going day to day, trying to be as normal as possible."
Foster has set up a website and hopes to at least increase awareness about ALD.
"We just feel alone right now, because nobody knows about this disease. And when you say, 'My son has ALD,' it doesn't hit like as if you say, 'Oh my son has a brain tumour,' which would affect him in almost the same way.
"So, we want to get it out there so people can know, like multiple sclerosis or breast cancer or anything like that, so we don't have to explain to everybody what's going on and what it is," Foster said.
There are treatments for ALD such as Lorenzo's oil, made from olive and rapeseed oils, and bone marrow transplants. However, Foster said, a metabolic specialist at the Sick Kids' Hospital in Toronto didn't offer much hope that either of these treatments would slow Gavin's disease at this stage.
In 1992, Susan Sarandon and Nick Nolte starred in the movie "Lorenzo's Oil," about the real-life struggle of the Odone family to find a cure for ALD.
Foster said a new gene therapy was recently discovered in Paris, France, using a modified human immunodeficiency virus (HIV), which works similar to a bone marrow transplant to slow the progression of symptoms.
"They're also working on another thing, to regenerate myelin in the brain. Once that deteriorates, they've never been able to find a way to fix it, to repair it, and that causes the symptoms of the disease. Hopefully, they'll be starting a clinical trial on that as well," Foster said. Myelin is the insulating sheath covering nerve cells.
Foster has been in contact with one of the researchers who discovered the gene therapy and has provided him with information about Gavin. "I just have to send test results like his MRI results and his psychology testing results and they'll be able to take a look at that to see how advanced he is," she said.
The next clinic trial will be starting in June 2010.
Foster said she hasn't had time to think about how much it would cost to go there if Gavin is accepted for the clinical trial because so much has been happening with him.
She has started selling some ALD bracelets to create awareness about the disease and hopes to be able to raise some money in the coming months to go to France next year.
Anyone interested in learning more about Gavin's illness or in helping his family can obtain more information online at www.caringbridge.org/visit/gavinfoster/mystory.