Athena Santos Roy hopes to finally walk after surgery in St. Louis next month. Athena is pictured with her brother Phoenix Santos Roy, stepfather James Duncanson and mother Fiona Santos. Photo courtesy of Fiona Santos

Young girl’s dream inspires a community

By 
  • September 20, 2017

Athena Santos Roy’s dream is to walk and run and jump just like any other kid.

And now, due to an outpouring of support from the Catholic school community, the nine-year-old girl who lives with a form of cerebral palsy is on her way to making that dream come true.

The story began as a school project at Our Lady Help of Christians Catholic Elementary School in Richmond Hill, Ont. Athena’s mother, Fiona Santos, teaches Grade 7 at the school and she was talking to her colleagues in January about a surgery available in the U.S. that could allow her daughter to walk independently for the first time in her life.

“Right from the get-go, when they found out that this was an opportunity for Athena, everybody in the school rallied behind her — staff, families, parents, students, you name it,” said Santos.

In just eight months the family reached their goal of $120,000 and Athena’s life-changing surgery is scheduled for Oct. 10 at St. Louis Children’s Hospital in Missouri.

“I’m so excited. I just can’t wait,” said Athena.

Athena was born with periventricular leukomalacia (PVL), a form of cerebral palsy that limits movement in both her legs and in her left hand.

She walks on her tiptoes with the help of a gait trainer or walker and she keeps regular appointments with chiropractors and physiotherapists to stretch out her muscles. Her disability has never stopped her from being her bubbly and cheerful self.

Last December, Santos heard about a surgical procedure called Selective Dorsal Rhizotomy that could correct muscle stiffness in Athena’s body. She discovered, however, that the surgery is done in only a few locations, which led her to Dr. T. S. Park, a world-renowned paediatric neurosurgeon at St. Louis Children’s Hospital who specializes in the procedure.

“The success rate with him is just incredible,” Santos said. “If Dr. Park approves you, you know there’s going to be significant improvement in some way and in Athena’s profile, he also predicts that there will be the possibility that she could walk independently.”

Santos said she was overwhelmed with hope and by January she had launched a fundraising campaign on GoFundMe.org.

“We reached out to anyone and everyone that could help us,” she said.

Although the surgery is covered by the Ontario Health Insurance Plan (OHIP), Athena was informed she did not qualify. At first, she was told it was because she lived outside the catchment area of the two institutions in Ontario that could approve Athena for OHIP coverage. When that hurdle was overcome, she was told her surgery could not be approved because she was older than the “optimal age range” of four to seven years old.

 That left St. Louis as Athena’s sole option.

“Dr. Park, again, is a world-renowned specialist of this surgery and he does the surgery on people as young as two to 50 years old,” said Santos. “At that point, we were well underway (with fundraising), so there was hope. To me, it was like, if I could at least fundraise enough, there was hope.”

The campaign to help Athena spread like wildfire at Our Lady Help of Christians school. Before the family knew it, the school was organizing cookie sales, charity tournaments and movie nights.

Mary Punzo, school secretary, has spearheaded many of the fundraising events. She said that, in a way, Athena’s dream has become the entire community’s dream, too.

“She’s one of our students and I think we would probably have done that for anyone who was in need,” said Punzo. “Every time, we always exceeded our expectations of how much we would raise for every event.”

In February, Punzo helped organize a simple Valentine’s Day cookie sale. She expected to raise about $800, but large orders for cookies began to pour in to the office. The sale brought in more than $3,000.

“I keep telling (Athena) that I’m going to have the first dance with her,” said Punzo.

Soon, other schools in the York Catholic District School Board began to join the fundraising campaign. School principal Francesco Rizzi contacted other principals and they held civiies days and other small events to help Athena.

Jean Vanier Catholic High School, where Athena’s 17-year-old brother Phoenix attends, also held events.

Athena’s educational assistant, Daniela Provenzano, organized her own fundraising campaign at her local parish, St. Luke’s in Thornhill, Ont. selling handcrafted bookmarks to parishioners.

“I never thought in a million years that we would reach our goal,” said Santos. “I can’t even describe to you how moving it was, especially because they believed in us and they believed in the possibility for my daughter.”

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