Hailey Jones can’t cry for help or press a button for assistance when she lies in a hospital bed at Victoria General Hospital’s pediatric intensive care, fighting pneumonia.
Her parents, Darryl and Patty Jones, take turns monitoring her closely, worrying about their 10-year-old daughter’s health, dealing with stress and sitting in a hospital room for hours with little respite. It’s a situation the family has found itself in four times since 2008.
Low muscle tone in Hailey’s throat, due to her cerebral palsy, makes it difficult for her body to protect her airways and allows saliva to reach her lungs, leading to infections.
“It throws your whole life upside down because you don’t know when it is going to happen,” said Darryl. “It’s hard on the family because we both have jobs and we have to adjust our job situation and it really throws you for a loop.”
Patty usually stays with Hailey while Darryl commutes between Nanaimo and Victoria and looks after their six-year-old son, Dawson. One of the major struggles is finding accommodation and being able to stay together as a family for support in emergency situations.
“Trying to find housing is next to impossible,” said Darryl.
Thanks to one girl’s dream, finding a place to stay will become easier.
Victoria’s Jeneece Edroff, 17, dreamed of building a home for children and their families requiring medical care in Victoria, whether at Victoria General Hospital, the Queen Alexandra Centre or for specialist appointments. She approached the Queen Alexandra Foundation for Children and the goal of building Jeneece Place was established.
“I just can’t wait for it to be open and to get families in here,” she said.
The home is on the Victoria General Hospital’s grounds – a two-minute walk to the hospital.
Edroff knows the stress finding accommodation can place on a family, having experienced it when she was in the hospital. Edroff was diagnosed with neurofibromatosis when she was three, which causes tumours to grow on nerve pathways. They were growing off almost every nerve root of her spine.
This is not the first time Edroff has been involved in a campaign to help children.
At seven years old, she set a goal of raising $1 million in pennies for the Variety Show of Heart’s Telethon and has raised more than $1.5 million since then.
Edroff’s mother, Angie, said her daughter sets her sights on a goal and sticks to it. She said Jeneece is a good example that people can accomplish anything if they put their mind to it.
“We are very proud of Jeneece and what she has accomplished,” she said.
Jeneece Place is currently under construction and slated to open on Edroff’s 18th birthday on Jan. 20, 2012.
Edroff said it’s going to have a huge impact on families and is amazed at how fast her dream has transformed into a reality. She said it’s overwhelming when she checks on the progress.
Jeneece Place will be a home away from home for families in need as they deal with the stress of medical procedures or emergencies in Victoria.
The home will be 10,500 square feet with 10 bedrooms, which will accommodate two adults and two children. It will include a kitchen, dining room, games room and more.
Bruce Williams, funding chairman for the Queen Alexandra Foundation’s Jeneece Place project, said there is nothing like it on the Island.
“It provides them (families) with security, comfort and peace of mind letting them concentrate on getting the family member to heal,” he said.
The Queen Alexandra Foundation for Children will oversee Jeneece Place and its operations once open. So far, $3.7 million has been raised for the project but the foundation estimates it needs $350,000 more to finish. The project is estimated to cost just over $4 million, which includes construction, landscaping and equipment purchases. Estimates for operating costs are still being assessed. Jeneece Place will be available to families for a nominal fee.
The Jones family said the home will be an amazing asset.
“It would be easier, it wouldn’t just be me all the time staying there,” said Patty. “He (Darryl) could come and give me a break and I could spend time with Dawson because it’s not just about Hailey – it’s about us as a family.”
“For families on the North Island I find it amazing because one of the obstacles I think most families run into, and what we’ve run into, is finding adequate housing while our daughter is in hospital,” added Darryl.
Jennifer Jasechko, vice-president of the Queen Alexandra Foundation for Children, said parents don’t want to be too far away from their sick child and this facility on the hospital grounds will be a great asset for them.
“It’s just going to be such a blessing for families in the north and central Island area to have a place to stay,” said Jasechko.
For information, please go to www.queenalexandra.org.