Fundraising concerts to support youngster's medical treatments.
A benefit concert was held at the Rockpile Night Club called Kisses for Haley on Sunday. Haley, 10, suffers from AVM - a tangle of abnormal and poorly formed arteries and veins. The concert was held to raise funds for treatment. She is seen her with her mom Sherry.
Staff photo/IAN KELSO
Haley Stewart just wants to be a kid - and by all outward appearances, her smiling face and upbeat attitude suggest she's just that.
But for the 'sweet-spirited' 10-year-old who rocked the stage at the Kisses for Haley concert in Etobicoke this past weekend, even the most basic of childhood activities can be life threatening due to a rare Arteriovenous Malformation (AVM) in her brain.
Running and playing with her friends is now a danger to her health.
Trampoline birthday parties have to be missed.
Riding the roller coasters at Canada's Wonderland is out of the question.
"She just turned 10 last month and she's has to change her life substantially - she has to keep her heart rate at an even level or it could cause her to have a seizure. She can't be a kid because it could kill her," said Haley's mom Sherry Champion Stewart. "I was told that even if she gets hit in the head hard enough with a pillow, that it can kill her."
Haley's ordeal began when she was eight years old in December 2008. While visiting her father just outside Guelph, she lost control while driving a snowmobile, hit a snowbank, went airborne, smashed into the windshield of a Jeep, and was thrown into a creek, where she banged her head on a rock. If not for her helmet, she might have been killed instantly.
Instead, Haley seemingly escaped the accident with just a badly broken leg and a sliced upper left thigh. The injuries kept her in physiotherapy five days a week and home from school for seven months, but when she finally got her cast off in July 2009, Champion Stewart hoped everything would go back to normal. But it wasn't to be.
In January of this year, Haley had her first seizure. She walked up to her mom out of the blue one day and told her something was wrong with her arm - it was controlling itself.
"Then all of a sudden her left arm shot straight up in the air, her right arm went up in the air, her eyes rolled back in her head and she began to have a full-body seizure," Champion Stewart recalled.
Champion Stewart caught Haley before she hit the ground, then frantically dialed 911. She watched helplessly as her only child turned blue in her arms.
"I just kept saying 'my baby's gone, my baby's gone.' Then, just before the ambulance got here, Haley managed to take a deep breath in. She came back," she said.
By the time they arrived at the hospital, Haley was awake and talking, but slurring her words.
"As we were talking, she looked up at me and said 'Mama, Mama, it's coming back. Make it stop, make it stop.' Then she had another seizure."
Once stabilized, Haley was transported to the Hospital for Sick Children, where her diagnosis with a brain AVM six centimetres in diameter was confirmed. An AVM is a tangle of abnormal and poorly formed blood vessels that have a higher rate of bleeding than normal vessels. Brain AVMs are of special concern because of the damage they cause when they bleed, leading to seizures, stroke-like symptoms and severe headaches.
At SickKids, Champion Stewart was told that Haley's AVM was inoperable.
"At that point I was devastated. They told me there's nothing they could do; they told me to live every day like it's her last," she said, recalling her despair. "They said they couldn't predict when or if the AVM was going to rupture, but that it could kill her instantly, or that it could develop a brain bleed. I couldn't accept that. I couldn't give up on my child's life."
After getting a second, more positive opinion from a neurosurgeon in London, Ont., Champion Stewart heard about the Mayo Clinic in Rochester, Minnesota.
"The reason why I want to bring her there is because they have a team of 50 neurosurgeons, both vascular and pediatric, who actually specialize in AVMs. They have a whole team there, which is absolutely fantastic," she said.
"We're determined to get this done for her so that she can live her life. She deserves a life. I want her to have kids of her own, I want her to experience marriage, to have a career. It scares me to think she might not."
The only catch is, the doctors at the Mayo Clinic won't even look at Haley's file until her family can come up with the $8,000-$10,000 consultation fee.
Enter the Kisses for Haley concerts. For the next three weekends, a whole host of bands are lined up to take to the stage at the Rockpile Bar and Night Club in Etobicoke - with all proceeds going towards Haley's medical care.
"We really need people to come out and support Haley. It's very, very crucial, because this will determine if we can get enough money to get Haley to the Mayo Clinic by September. I can't wait because once a brain bleed starts, that's it," Champion Stewart appealed. "I want my daughter to live. She's my only child. I've always called Haley my miracle baby because of everything she's been through. It's really hard when your child is looking at you and asking 'Mommy, am I going to die?' What do you say to that?"