Source: NiagaraThisWeek

Girl, 2, accepted for stem cell procedure

At the end of a whirlwind 24 hours after Avaia Di Marco was born, her parents, John and Ashely, learned how the rest of her life may be spent.
Diagnosed with spastic quadriplegic cystic fibrosis, Avaia, who just turned two this week, is not able to do very much on her own.
The disease affects all four of her limbs and causes involuntary movement and prevents her from, not only walking, but sitting up on her own. Her vision is also severely impaired, and she is limited to being able to detect light and colours.
And just this spring, Avaia stopped eating and now must receive food through a feeding tube.
“It’s been a struggle,” said Ashley.
Like many parents with severely disabled children, Ashley has become something of an expert on her daughter’s condition. Through information provided by doctors and contacts she’s met on internet chat rooms, she’s learned of an experimental treatment being offered in Germany.
The more she’s looked into it, researching its potential, as well as its risks, Ashely became convinced it was something she needed to try.
The treatment uses stem cells and would involve using a needle to extract them from Avaia’s hip. From there, the cells — which have the ability to grow into any other type of cell in the body — are turned into neurons and injected into spine through where they travel up into the brain.
Ashley said she’s heard stories of near miraculous recovery following the treatment, with some patients regaining full movement.
She said there’s “tonnes of stories of all these people who have gone, and it’s helped them.”
And while everyone has such dramatic improvement, anything that helps at all would be worth a try, she said.
The treatment is being researched in Canada, but Di Marco said there’s is no opportunity yet for patient trials.
But the treatment does not come without a cost. To send the family over and pay for the treatment, as well as the post-procedure medication, they will need to pay $30,000.
“It’s worth every penny to try,” she said. “The quality of life that she’s been given — it’s definitely not fair.”
To help the Di Marco’s out, Ashley’s mother, Lynn, who works at the Avondale at Carlton and York streets, is organizing a series of fundraisers with her other daughter, Brittany and co-worker Dawn Bomers.
The first is a yard sale and barbecue at John’s parents’ place in Thorold. The sale takes place July 31 starting at 9 a.m. at 87 Collier Rd.
On Aug. 7, there will be a bowlathon at Parkway Lanes, at 327 Ontario St. The events rolls out at 5 p.m.
On Aug. 9 between 5-7 p.m., the McDonalds at 85 Ontario St. will be donating 30 per cent of their profits of meals sold to those with a special Avaia’s Journey ticket.
And on Aug. 28, just a couple weeks before the family sets out for Germany, there will be a casino night held at Canadian Corp located at 7 Clairmont St. in Thorold.