[Note – This story has been updated]
CLOVERDALE — A single mother in Surrey has taken to a crowdfunding website to help raise money for a vehicle that can take her severely disabled daughter to preschool.
Danielle Brisebois-Duncan says her three-and-a-half-year-old daughter Tayler has a rare genetic condition named Adams-Oliver syndrome that has kept her in and out of BC Children's Hospital since she was born. Tayler has a heart condition, is sight impaired, suffers from epilepsy and makes use of a wheelchair.
Danielle met Tayler's father in 2010 and went to live with him in Michigan for six months. But the relationship didn't last.
Although she underwent several ultrasounds, doctors were unable to predict her daughter's medical issues other than the observation she had "stubby" fingers and toes.
"I thought, what could that possibly mean? Apparently it meant everything."
Adams-Oliver syndrome is so rare that it's difficult to predict what long-term effects may be in store for Tayler. There are only 100 individuals worldwide who have been documented with this disorder, and Tayler is only the eighth person believed to have developed the disorder from the Dock6 gene.
Danielle says the geneticist who made the diagnosis submitted a medical paper on the rare condition.
Tayler suffered a stroke on the day of her birth and was airlifted from Powell River to Vancouver, where she spent the first eight months of her life at BC Children's Hospital.
Within the first few weeks her stomach was so swollen that surgeons had to remove most of her small intestine.
Tayler now requires a permanent intravenous drip which delivers all the vitamins, minerals and fats that can no longer be absorbed through her intestines.
She is currently on a surgery wait list to correct her heart condition.
With an 11-month-old daughter and two older children, 11 and 14 years old, whom she sees every other weekend, Danielle relies on social assistance and disability payments from the federal government.
Although Bayshore Nursing helps her care for Tayler, she has no family support in Surrey.
Danielle says she wants to register Tayler in school but doesn't have a vehicle that can transport her children reliably and adds it would be impossible to walk to school in the rainy season.
"Especially with all she's got, the last thing I need is for her to get sick."
If Tayler takes after her mom, however, she's going to be a fighter. Eight years ago, Danielle developed an addiction to Percocet painkillers to treat migraine headaches. The ensuing drug addiction led her family to seek the assistance of the reality TV show Intervention, where she spent three months in a Kelowna recovery centre.
"It was actually the best thing that ever happened to me. It saved my life, that show was amazing. If it wasn't for them I probably wouldn't be here," she said.
In March, Danielle will celebrate her sixth year clean and sober.
"There are so many people who have this same problem. It's one of the hardest drugs to get off of, it's horrible. But you know once I got to the rehab it really took about two days to get off it. It was really amazing and I haven't looked back."
Danielle has started a crowdfunding page on the website Youcaring.com where she hopes to raise $60,000 for a van and another $25,000 to retrofit the vehicle with a wheelchair lift. If she can meet her goal, Danielle will use whatever is left over to buy life insurance in the event some unexpected incident prevents her from caring for Tayler.
"I couldn't imagine her in a home. That would kill me," says Danielle.
To read about Tayler's story, visit Youcaring.com.