There is cruise which is open to classics, antiques, muscle cars & motorcycles. Rain out date for Sunday July 22, 2018. The idea of the cruise is to raise awareness to this terrible disease called Spinal Muscular Atrophy (SMA).
It will be called “Kruzzin For Khloe” and is set to start in Scarborough at Tim Hortons parking lot at Progress Ave & William Kitchen Rd. Kennedy Road – 401 area. We will have a meet and greet at 8:00 am and start the cruise at 9.
We then head out to another meeting spot at Pro Hockey Life, 75 Consumers Road in Whitby from 10:15am-11am.
Then Ultramar on Hwy 7 & Lansdowne in Peterborough.
The final destination will be in Peterborough at Lansdowne Place Mall in the north west corner parking lot by Dairy Queen from 12:30pm-4pm.
SPOTS ARE LIMITED. Vehicles must pre-register to participate. Pre-register at : firstname.lastname@example.org.
Upon arrival we will display the participating vehicles for public viewing and have tables set up with info on SMA.
Proceeds to help Khloe Madgett.
The Peterborough community was introduced to Khloe last year. People rallied behind the family by donating thousands of dollars to a GoFundMe account and Butterflies For Khloe charity that was established to provide medical equipment for the little girl.
No treatment medication for SMA was available until this summer when Health Canada approved a new drug called Spinraza. Khloe’s mom, Jessica Madgett, says the drug doesn’t reverse the effects of SMA, but slows its progression. The problem is, the first year of treatment costs US$750,000 with subsequent years after costing around US$375,000 annually.
Although the drug is covered by some benefit companies in Canada, Jessica and her husband Matt don’t have insurance or medical benefits to cover the cost. And Jessica says they are unable to buy into a medical plan because of Khloe’s pre-existing condition.
This has left the family feeling helpless when all they want is to help Khloe be as healthy as possible.
“I feel … frustrated and stressed that I can’t do anything to stop this as I watch her (Khloe) getting weaker by the day,” says Khloe’s grandmother, Angie Madgett. “Even if we could sell all of our houses and everything we had, we still couldn’t get enough (to cover the cost of ongoing treatment).”
The Madgetts aren’t looking for money, knowing the amount is too much to ask for. Jessica says they just want to raise awareness about the issue in hopes of having the medication covered by public drug insurance. That, after all, is their only hope of getting Khloe the medication she needs.
Jessica has sent letters to both MP Maryam Monsef and MPP Jeff Leal explaining the issue. A representative from Monsef’s office told This Week and mykawartha.com they have reached out to the Madgetts and are exploring how they can help.
According to the website of non-profit group Cure SMA, Canada’s national review committee is exploring whether the drug should be covered publicly. If approved, the matter will go to provincial drug advisory committees before each province determines if it will be funded by the Ministry of Health. The entire process could take between 12 to 24 months.
“Spinraza has not been through the processes of health technology assessment review that are required for new medicines approved by Health Canada to be available for provincial/territorial public drug insurance. Spinraza will undergo review by the various health technology assessment review bodies in Canada, notably the Common Drug Review,” reads a statement on the Cure SMA website.
“We recognize that this is a period of apprehension and uncertainty for the SMA community and we want to ensure everyone understands that we are working hard to bring Spinraza to Canadian patients in need as quickly as possible.”
That provides little consolation for the Madgetts who can only sit back and watch Khloe’s condition deteriorate with each passing day. But despite what her little body is going through, you’d be hard-pressed to know the challenges the spunky kid is dealing with. Khloe has a spark and smile that will light up a room. If it wasn’t for her wheelchair, you couldn’t tell she was suffering at all.
Khloe was born on Sept. 2, 2014. Despite meeting most milestones for a baby in its first year of life, Khloe’s family started to notice that she couldn’t bear any weight on her legs. She was crawling less and less, prompting the Madgetts to take their little girl to the doctor.
During an appointment on Christmas Eve 2015, they were told something was seriously wrong with Khloe because she had no control of her leg muscles. On Boxing Day, the family went to an emergency appointment at Sick Kids Hospital in Toronto.
An MRI the following day found that Khloe had an arachnoid cyst on her spine that was blocking nerve signals running through her body. Jessica says doctors told her it was rare, but provided hope that it could be treated.
A surgery was scheduled to drain the cyst, thus eliminating the blockage. However, prior to the surgery, routine blood work was done which uncovered that Khloe was dealing with much more than a cyst.
SMA eventually impacts every muscle in the body making it hard for the person to walk, sit, stand, eat, breathe and swallow.
Jessica says Khloe’s condition is progressively getting worse. Khloe is completely dependent on people to help her move around if she’s not in her wheelchair. Sleeping is particularly challenging because Khloe can’t roll over on her own and is hooked up to machines that monitor her heart rate and oxygen levels throughout the night.
Jessica says she has nurses that come into their home a couple of times a week to help Khloe during the night.
“But I’m still up all night. I’m always on alert,” says Jessica.
Despite this, the Madgetts do what they can to keep Khloe happy and feeling accepted. During the day, Khloe attends daycare and will start school next fall. The family also goes on fun outings, with the most recent being the Norwood Fair.
On behalf of Jessica and Matt, Angie reached out to fair organizers before they went to see if there were many rides Khloe could go on due to her conditions. Angie says Albion Amusements rolled out the red carpet for Khloe providing her with ride passes, free concessions as well as an open invitation to play any carnival games she wished free of charge.
These days provide a glimmer of hope for the Madgetts who know that people are still in their corner. They just hope that continues as work is done to determine if the medication Khloe needs can be covered.
“The drug is finally here and we can’t get access to it for her. It’s just not fair,” says Angie.
Story credit: Lance Anderson, Peterborough This Week