Caring for Chiara: a North York family's challenge

Community Oct 08, 2014 by Paul Futhey North York Mirror

How do you treat an illness when you don’t even know exactly what it is?

That question has been Fran Davide’s reality for more than seven years.

Speaking in the living room of her North York home where she and her family have lived since 2000, Fran admits to being tired.

“You don’t know what sleeping is anymore,” she says, referring to a period that has now reached “seven years of pure pressure and stress.”

Fran’s oldest daughter, Chiara, is 22. Today, Chiara cannot walk, stand, feed or dress herself. She lives at home and requires round-the-clock care. Seizures in the middle of the night are commonplace.

Fran proudly shows a picture taken at Chiara’s Grade 8 graduation – about 15 months before things changed.

“She was the most loving, sensitive person,” Fran says, describing a young girl who was a gentle soul, one to whom all the animals would gravitate toward on nature walks.

OCTOBER 2007

Since the fall of 2007, it’s been a turbulent journey for the family, one that has seen its members – Fran, her husband Romano Cassuoli and Chiara’s younger sister Sara – plunged into a world of doctors’ appointments, tests, CT scans, referrals, spinal taps, MRIs and alternative therapies. There have been visits to Italy, Germany and several American states.

But a definitive diagnosis remains elusive.

It’s been nearly seven years since Fran got a call from a teacher at Chiara’s high school telling her that her daughter, then 15 and in Grade 10, wasn’t doing her homework.

The news was strange to Fran, especially since Chiara had voluntarily taken a math course that July to better prepare for the school year. But sitting down with her daughter that weekend, Fran knew something was wrong with her bright, athletic girl: there was a noticeable change in her writing style.

Chiara’s cognitive decline would be rapid and steep. By the end of October of that year, Fran had pulled Chiara out of school (she’s never been back). A physical decline would follow. Chiara has now been immobile and non-verbal for five years.

The intervening years have been a challenge to get a diagnosis and treatment. Lyme disease was suspected (a blood test from a lab in the U.S. in June 2008 did result in a ‘strong positive’ for Lyme) but Chiara has never been diagnosed with it in Canada. The roller-coaster of emotions on the family has been wearing. It’s all hard for Fran to re-visit.

“Now I question everything,” Fran simply says today. “I’m not sure about what this whole Lyme thing is. We’re all so different.”

“It’s just one big grey area.”

RESOURCES STRAPPED

With no definitive diagnosis, the resources of organizations equipped to help people deal with effects of certain conditions simply aren’t available.

“She’s in a nowhere territory, nowhere land, no diagnosis and no support – outside the regular support that is out there (for palliative care),” Fran says.

Today, the family copes with Chiara’s day-to-day care as best they can. They do have a support worker who visits for 20 hours a week spread out over weekdays.

But funds are an ongoing challenge, especially for equipment. A stander, a device that provides different positioning than that’s offered by a standard wheelchair, would enable Chiara’s body to function better by providing the necessary gravity. The family had been able to borrow one for a time but had to return it once attempts to get a permanent one funded were unsuccessful, Fran says. A more supportive wheelchair would also help.

To add to it all, Fran knows she has a job search looming in order to help with her income. She was forced to sell her business earlier this year in order to concentrate more on Chiara’s care and be closer to her daughter.

“I try to focus on my day and moving forward,” she says.

“When something tragic happens to you, you become a spectator in life.”


Looking to raise funds for a community project, a non-profit initiative or an entreprenurial idea? Visit FuelLocal.com to find out more.

Caring for Chiara: a North York family's challenge

Community Oct 08, 2014 by Paul Futhey North York Mirror

How do you treat an illness when you don’t even know exactly what it is?

That question has been Fran Davide’s reality for more than seven years.

Speaking in the living room of her North York home where she and her family have lived since 2000, Fran admits to being tired.

“You don’t know what sleeping is anymore,” she says, referring to a period that has now reached “seven years of pure pressure and stress.”

Related Content

Fran’s oldest daughter, Chiara, is 22. Today, Chiara cannot walk, stand, feed or dress herself. She lives at home and requires round-the-clock care. Seizures in the middle of the night are commonplace.

Fran proudly shows a picture taken at Chiara’s Grade 8 graduation – about 15 months before things changed.

“She was the most loving, sensitive person,” Fran says, describing a young girl who was a gentle soul, one to whom all the animals would gravitate toward on nature walks.

OCTOBER 2007

Since the fall of 2007, it’s been a turbulent journey for the family, one that has seen its members – Fran, her husband Romano Cassuoli and Chiara’s younger sister Sara – plunged into a world of doctors’ appointments, tests, CT scans, referrals, spinal taps, MRIs and alternative therapies. There have been visits to Italy, Germany and several American states.

But a definitive diagnosis remains elusive.

It’s been nearly seven years since Fran got a call from a teacher at Chiara’s high school telling her that her daughter, then 15 and in Grade 10, wasn’t doing her homework.

The news was strange to Fran, especially since Chiara had voluntarily taken a math course that July to better prepare for the school year. But sitting down with her daughter that weekend, Fran knew something was wrong with her bright, athletic girl: there was a noticeable change in her writing style.

Chiara’s cognitive decline would be rapid and steep. By the end of October of that year, Fran had pulled Chiara out of school (she’s never been back). A physical decline would follow. Chiara has now been immobile and non-verbal for five years.

The intervening years have been a challenge to get a diagnosis and treatment. Lyme disease was suspected (a blood test from a lab in the U.S. in June 2008 did result in a ‘strong positive’ for Lyme) but Chiara has never been diagnosed with it in Canada. The roller-coaster of emotions on the family has been wearing. It’s all hard for Fran to re-visit.

“Now I question everything,” Fran simply says today. “I’m not sure about what this whole Lyme thing is. We’re all so different.”

“It’s just one big grey area.”

RESOURCES STRAPPED

With no definitive diagnosis, the resources of organizations equipped to help people deal with effects of certain conditions simply aren’t available.

“She’s in a nowhere territory, nowhere land, no diagnosis and no support – outside the regular support that is out there (for palliative care),” Fran says.

Today, the family copes with Chiara’s day-to-day care as best they can. They do have a support worker who visits for 20 hours a week spread out over weekdays.

But funds are an ongoing challenge, especially for equipment. A stander, a device that provides different positioning than that’s offered by a standard wheelchair, would enable Chiara’s body to function better by providing the necessary gravity. The family had been able to borrow one for a time but had to return it once attempts to get a permanent one funded were unsuccessful, Fran says. A more supportive wheelchair would also help.

To add to it all, Fran knows she has a job search looming in order to help with her income. She was forced to sell her business earlier this year in order to concentrate more on Chiara’s care and be closer to her daughter.

“I try to focus on my day and moving forward,” she says.

“When something tragic happens to you, you become a spectator in life.”


Looking to raise funds for a community project, a non-profit initiative or an entreprenurial idea? Visit FuelLocal.com to find out more.

Caring for Chiara: a North York family's challenge

Community Oct 08, 2014 by Paul Futhey North York Mirror

How do you treat an illness when you don’t even know exactly what it is?

That question has been Fran Davide’s reality for more than seven years.

Speaking in the living room of her North York home where she and her family have lived since 2000, Fran admits to being tired.

“You don’t know what sleeping is anymore,” she says, referring to a period that has now reached “seven years of pure pressure and stress.”

Related Content

Fran’s oldest daughter, Chiara, is 22. Today, Chiara cannot walk, stand, feed or dress herself. She lives at home and requires round-the-clock care. Seizures in the middle of the night are commonplace.

Fran proudly shows a picture taken at Chiara’s Grade 8 graduation – about 15 months before things changed.

“She was the most loving, sensitive person,” Fran says, describing a young girl who was a gentle soul, one to whom all the animals would gravitate toward on nature walks.

OCTOBER 2007

Since the fall of 2007, it’s been a turbulent journey for the family, one that has seen its members – Fran, her husband Romano Cassuoli and Chiara’s younger sister Sara – plunged into a world of doctors’ appointments, tests, CT scans, referrals, spinal taps, MRIs and alternative therapies. There have been visits to Italy, Germany and several American states.

But a definitive diagnosis remains elusive.

It’s been nearly seven years since Fran got a call from a teacher at Chiara’s high school telling her that her daughter, then 15 and in Grade 10, wasn’t doing her homework.

The news was strange to Fran, especially since Chiara had voluntarily taken a math course that July to better prepare for the school year. But sitting down with her daughter that weekend, Fran knew something was wrong with her bright, athletic girl: there was a noticeable change in her writing style.

Chiara’s cognitive decline would be rapid and steep. By the end of October of that year, Fran had pulled Chiara out of school (she’s never been back). A physical decline would follow. Chiara has now been immobile and non-verbal for five years.

The intervening years have been a challenge to get a diagnosis and treatment. Lyme disease was suspected (a blood test from a lab in the U.S. in June 2008 did result in a ‘strong positive’ for Lyme) but Chiara has never been diagnosed with it in Canada. The roller-coaster of emotions on the family has been wearing. It’s all hard for Fran to re-visit.

“Now I question everything,” Fran simply says today. “I’m not sure about what this whole Lyme thing is. We’re all so different.”

“It’s just one big grey area.”

RESOURCES STRAPPED

With no definitive diagnosis, the resources of organizations equipped to help people deal with effects of certain conditions simply aren’t available.

“She’s in a nowhere territory, nowhere land, no diagnosis and no support – outside the regular support that is out there (for palliative care),” Fran says.

Today, the family copes with Chiara’s day-to-day care as best they can. They do have a support worker who visits for 20 hours a week spread out over weekdays.

But funds are an ongoing challenge, especially for equipment. A stander, a device that provides different positioning than that’s offered by a standard wheelchair, would enable Chiara’s body to function better by providing the necessary gravity. The family had been able to borrow one for a time but had to return it once attempts to get a permanent one funded were unsuccessful, Fran says. A more supportive wheelchair would also help.

To add to it all, Fran knows she has a job search looming in order to help with her income. She was forced to sell her business earlier this year in order to concentrate more on Chiara’s care and be closer to her daughter.

“I try to focus on my day and moving forward,” she says.

“When something tragic happens to you, you become a spectator in life.”


Looking to raise funds for a community project, a non-profit initiative or an entreprenurial idea? Visit FuelLocal.com to find out more.