Surgery may help Madison walk on her own, but it's not offered in Toronto
Shannon Martin | CBC News | Posted: February 8, 2017 10:00 AM | Last Updated: February 23, 2017
The 'Ultimate Leafs Fan' holding a party Wednesday evening to raise funds for surgery
As soon as the music starts, three-year-old Madison Ambos starts rocking side to side, her curly blonde pigtails bouncing.
"Again!" she screams, giggling as the music pauses, her playroom transformed into a dance floor.
The blue-eyed little girl is all energy, but Madison's free spirit is increasingly limited by her body. She was diagnosed with a form of Cerebral Palsy called Spastic Diplegia at 13 months. She feels constant stiffness, and it affects her motor skills.
Sitting in their Pickering home, Madison's mom and dad, Katherine and James, tell CBC Toronto it's like she's having a charley horse 24 hours a day, seven days a week.
"As she grows, she has what's called deformities," Katherine explained. "We're seeing that happen to her."
Madison uses a tiny gold walker to get around, and her little legs are fitted with custom pink braces — decaled with her favourite sports team, the Toronto Blue Jays.
But her feet are starting to roll inwards, which could prevent her from one day walking on her own.
That's why her family has decided to fly down to St. Louis Children's Hospital in Missouri for a complex and life-changing surgery, not available in Toronto.
"It's something we've always wanted for her," said Katherine, pausing, her voice breaking.
"We've dealt with the grief that comes with learning your child has special needs and what their life will look like, and the challenges she'll have ... But hearing there's a possibility for her to have more than what she has now, that's what's driving us and our family to do everything we can, because she deserves that."
Life-changing surgery
The surgery is called Selective Dorsal Rhizotomy, and will be performed by world-renowned surgeon, Dr. T. S. Park, who completed his fellowship training in Toronto.
In an email to CBC Toronto, his staff says he's performed the SDR surgery on about 20 children from Ontario.
The Ambos submitted videos of Madison using her walker, along with some x-rays and medical records.
Within weeks, they got the news from Dr. Park: she's a perfect candidate. The surgery is booked for May.
In a letter to the family, Dr. Park wrote Madison will see her balance and level of comfort improve, and perhaps most exciting — it's expected Madison will be able to "walk independently in all environments."
Hefty price tag
The procedure comes with a hefty price tag: about $140,000.
The family will have to stay in St. Louis for about a month after the surgery, and once back home, Madison will need special equipment and extensive rehab for about a year.
"It's totally worth it in our eyes," Katherine said.
The surgery was offered decades ago in Toronto, at the Hospital for Sick Children. The Ministry of Health told CBC Toronto in an email the Ontario government is considering bringing it back, but couldn't offer a timeline.
OHIP can cover some of the costs associated with surgeries out of the country, but the Ambos say the process so far for them has been challenging and time-consuming.
The paperwork must be filed before the procedure takes place.
"We've decided not to wait," said Katherine, looking at Madison as she puts together a puzzle.
"We want to give her what she needs as soon as possible."
Ultimate Leafs fan pitches in
To help cover the cost, Madison's family, friends, and even total strangers are holding a number of fundraisers.
Wednesday night, the Toronto Maple Leafs are pitching in.
The so-called Ultimate Leafs Fan, Mike Wilson, is hosting a private fundraiser in his Forest Hill home. His massive Leafs memorabilia collection will be on full display, and he's also reached out to a number of players past and present.
The focus of the night, he says, is on Madison, of course.
"I don't look at this as charity. This is a life-changer for a little girl," said Wilson.
Tickets for the party are $300 each.
Donations will continue to be accepted on Madison's GoFundMe page.
Any money raised beyond the family's $140,000 goal will be given to another GTA family planning to travel to St. Louis for the surgery.