Parents wish for many things for their children: happiness, a good education, the chance to grow up and explore and experience all the wonderful things that life has to offer.
But when it comes right down to it, at the most basic level, a parent yearns for two things above all others for their little ones: a safe place to call home, and good health.
For the Fedorak family, housing and health have been interlinked challenges for many years, and their path has taken them through some of the worst that life can offer, including the death of a child and the financial challenges that can accompany ongoing medical problems.
But when life could have led them to bitterness, they instead have chosen to see the blessings.
And with the help of the local Habitat for Humanity project, they're on the verge of one of the biggest blessings of all: finding a home for their family.
AN 'AMAZING' BABY
Lisa and Frank Fedorak, now 40 and 39 respectively, always knew they wanted children. After a healthy, though challenging pregnancy, the pair were thrilled to have that dream come true: they welcomed their first child, Chloe Isabel, on Feb. 5, 2001.
"It was amazing - she was amazing," recalls Lisa.
Chloe was deemed by all who saw her to be the ideal baby: calm and quiet, with a sweet and friendly disposition.
She cried so infrequently that her parents humourously wondered if she knew how, but it didn't seem cause for worry.
Chloe seemed to be developing normally - like most new parents, the Fedoraks were awed by her first little smiles and then later by her first laugh. As she reached six months, then seven, then eight, it became clear that she wasn't progressing physically like her peers: sitting up was still a problem and she couldn't crawl. She also started to develop problems with eating, frequently gagging.
But, still, there were no big red flags. Each of the minor "symptoms" was so mild that at first even their own doctor wasn't concerned. But it soon became clear that something wasn't quite right, and baby Chloe was eventually referred to a pediatrician.
Their first appointment came on Sept. 11, 2001 - the same day of the attack on the Twin Towers.
On a website the Fedoraks have created for their daughter, Lisa recalls that the entire day was a "nightmare" - first with the news about what was going on in New York, then the pediatrician's determination that something was indeed very wrong. He put them in touch with a neurologist, and over the course of the coming week, little Chloe underwent scores of tests, biopsies, blood work and scans. They were told it had been narrowed down to one of a group of degenerative conditions labelled as leukodystrophy. While doctors were still determining the specific type, the Fedoraks took out a stack of medical books from the library at UBC - under each class of leukodystrophy, the outcome was listed as "death."
They were devastated.
RARE CONDITION
It was eventually determined that Chloe had a rare genetic condition called Krabbe (globoid cell) leukodystrophy.
Krabbe's is a very rare neurodegenerative disease that is recessively inherited - both Lisa and Frank were, unknowingly, carriers of the recessive gene.
Those born with the disease are lacking a specific enzyme which helps break down the cerebrospinal fluid - without it, the fluid is toxic to the myelin sheath that covers the nerve fibres in the brain. Without the myelin, signals can't travel properly, and proper brain development is inhibited.
The result is usually a rapid progression in which a child loses all mental and motor function and often becomes deaf and blind. Most do not survive past two. There is no cure for the disease, but if it's diagnosed very early, an infant can receive a bone marrow or umbilical cord blood transplant to halt the progression - unfortunately for most children, the disease is not caught until it's already progressed too far.
In the coming months, the Fedoraks learned all they could about the condition but knew there was nothing to be done to help Chloe, aside from making sure she was as well cared for as possible. She ultimately spent time in Canuck Place Children's Hospice, and, two months shy of her second birthday, surrounded by her family, she passed away on Dec. 2, 2002.
SISTERS FOR CHLOE
The Fedoraks went on to welcome two more children to their family - Scarlett in 2005 and Greta in 2008.
Though the odds were in their favour, there was a slim chance that one of the girls could be born with Krabbe.
In-utero testing determined that Scarlett did indeed carry the genes; at just 24 days old, she underwent an umbilical cord stem cell transplant, one of less than two dozen children worldwide to have been treated for Krabbe's this way.
The procedure halted the progression of the disease - save for a few issues with motor skills, Scarlett is now a happy and healthy six-year-old attending school. Sister Greta was, happily, born without the condition and required no intervention.
The experience of losing Chloe and subsequently seeing Scarlett saved has made them passionate about encouraging newborn testing here in Canada.
"Down in the (U.S), they've started adding it to newborn screening. We're hoping one day it will be added here, too," she said.
They've become active in the Krabbe community, too.
"It's very rare. We've only met, in Canada, five other families - we go to a family and medical symposium every year, there's abut 150 families (affected) in the whole world," she said.
She says that Chloe's arrival was a dream come true for them, and they will always remember the joy she brought them despite losing her.
"Frank and I had always dreamed of having children," she said.
The ongoing medical challenges throughout the progression of Chloe's condition, and the lengthy period during Scarlett's treatment, led to significant financial challenges for the family.
They had to live close to the hospital while Scarlett was being treated, even though the high rental costs in the area were beyond their budget.
When Scarlett was released from hospital, they had just learned that the building they were in was being torn down for a new development and they had to quickly find a new home that was as sterile as possible for her.
They eventually lucked into a new basement suite that seemed to fit their needs.
But a twist that no one could have expected forced them out of their home literally in the middle of the night: the police came to the door to tell them the home was now a crime scene and they had to evacuate - someone had been shot on the front lawn in an apparent gang-related shooting.
"I just lost it - it wasn't easy to transport her, there were treatments we had to give her," says Lisa.
Fortunately, they were able to move in with Frank's parents for a few months, but they still needed to find their own place.
When they heard about Habitat for Humanity and its townhouse project in Burnaby, they submitted an application and crossed their fingers.
A FAMILY 'HABITAT'
Habitat for Humanity is a non-profit organization that works to create affordable housing for sale to hard-working lower income families.
That's the official description of what the organization does, but when it comes right down to it, ultimately they're providing something that is impossible to define: the dream of a home, of a place to put down roots with your family, a place to rebuild, and pride in home ownership.
Leona Cullen, a family liaison coordinator with the Vancouver arm of Habitat for Humanity, says the impact that having a permanent home has on a family is immeasurable.
"It affects their lives in so many different ways," she says.
The application process is a stringent one, she notes.
"It's very extensive," she says, noting that everything from personal background to employment references come into play with the selection committee.
"These are families who work really hard," she said.
Families are chosen based on their need for affordable housing, the ability to repay the nointerest mortgage and a willingness to work towards the project through "sweat equity," usually by working on site at a building project literally putting up walls and laying foundations. The Fedoraks are part way through their 500 "sweat equity" hours.
Lisa says she's loved every minute of it and has learned her way around power tools and a construction site.
"It's such a happy place to be," she said. "I think of all the things I can do now, if I wanted to."
Building has also given them the chance to bond with the other families in the complex, some of whom are already living there and some of whom will be moving in around the same time they do, next year.
"The more we become involved, the more amazing it is," she said. "I am completely humbled - I can't believe the heart of people. Frank and I have met some pretty phenomenal people."
Lisa points to people like Vancouver real estate agent Keith Roy, who recently held an event dubbed 30 For 30, for his 30th birthday in an effort to raise $30,000 for Habitat for Humanity.
"People do wonderful things," she said.
The family doesn't have a specific date for moving in, but Lisa is already looking forward to it.
"To know that the girls are in a clean, new space - that we helped build it, that we did that, it's going to be wonderful. It means so much to us," she said.
The pair say they share their experiences in hopes that it will make a difference - in talking about Chloe, they hope to spread the word about Krabbe; in talking about Habitat, they hope to spread the word about the work the organization does.
"(Habitat for Humanity) changes people's lives," says Lisa.
For more about Habitat for Humanity, see www. habitatgv.ca.
The Fedoraks have created a website in honour of their daughter, Chloe Isabel, and about Krabbe leukodystrophy, at www. chloeisabel.com.
