She’s only 23 months old, yet she has suffered 27 bone fractures. Despite her many injuries, Zooey Schneider’s spirit remains unbreakable.
At a glance, you wouldn’t know that Zooey lives with a rare genetic condition. The adorable toddler is all smiles as she prepares to dig into her Happy Meal at the McDonald’s location on Parkside Drive. Her smile grows wider as she is presented with a colourful plastic figurine with yellow wings that match her bright t-shirt and floral headband.
Zooey is the youngest member of the Schneider clan to wear yellow to mark Wishbone Day May 6 – an international campaign that aims to raise awareness of osteogenesis imperfecta (OI). Her mom Monika, dad Brad and grandparents are also sporting yellow on this day, which happened to coincide with the annual McDonald’s fundraising event.
McHappy Day is celebrated at more than 1,400 McDonald’s restaurants across the country each May and sees $1 from the sale of each Big Mac, Happy Meal and hot McCafé beverage go towards Ronald McDonald House Charities.
This year, the day-long event raised more than $4.6 million for the organization that provides a home for families with children undergoing care at a nearby hospital.
Ronald McDonald House proved to be an invaluable service for the Schneiders, who found comfort and support at the Toronto facility that is located just steps away from the Hospital for Sick Children, where their daughter was hospitalized on a number of occasions.
“It was incredible, absolutely incredible,” said Brad.
What’s most incredible, however, is Zooey’s resilience.
The Waterdown girl was only 11 weeks old when, after a bath, her collarbone broke. “She cried instantly and I knew something was wrong,” said Monika, who rushed her daughter to McMaster Children’s Hospital.
An x-ray of Zooey’s tiny body revealed more than a dozen fractures in various stages of healing, sparking an investigation into what caused the baby’s injuries.
That probe began innocently enough but quickly developed into a case of suspected child abuse. “They concluded that it was non-accidental injury,” alleged Monika, adding that she and her husband soon came under suspicion for causing their daughter’s injuries. The incident was reported to the authorities.
The Children’s Aid Society and Hamilton Police Service were called and conducted a thorough investigation, claimed Monika.
The Waterdown family was living a nightmare.
The Schneiders were placed under observation for weeks. They say they weren’t allowed to be alone with Zooey. Family and friends rallied, taking shifts to act as supervisors.
“We had so many offers from people who were willing to rearrange work schedules, move into our home, and give up time with their family just for us,” said Monika of the support she and Brad received.
Still, the parents were frantic. They were awaiting the results of genetic testing for osteogenesis imperfecta, one of the most common genetic causes of bone fragility, according to Dr. Jennifer Harrington of the Hospital for Sick Children’s Bone Health Centre. The tests, said Monika, yielded inconclusive results.
They sought help from their family physician, who was adamant a medical condition was to blame for Zooey’s numerous fractures. According to the Schneiders, their doctor made a referral to the Hospital for Sick Children and pleaded their case with the Children’s Aid Society.
“Time that should have been spent focusing on helping Zooey and finding out what was happening in her little body was consumed by meetings with CAS that literally went on for hours and hours,” said Monika, adding that the child welfare agency allegedly cautioned the family that Zooey would be placed into foster care should she suffer another break.
Then, Zooey broke again – a compression fracture in her spine. “We just right away went to Sick Kids because we knew the next step would be apprehension,” said Monika. “We didn’t have an appointment but we just basically begged and pleaded for them to help us.”
They did. By then, the police had concluded its investigation and, according to Monika, had determined there was no criminal element to their daughter’s injuries. CAS would remain involved until Zooey’s medical condition was identified and confirmed. At her first official appointment with doctors at the Toronto hospital’s Bone Health Centre, she was diagnosed with osteogenesis imperfecta (OI).
Also known as brittle bone disease, the disorder is variable with a number of different types. Further genetic testing revealed that Zooey suffers from Type 5, which means she doesn’t have bone deformities or bowing that are often associated with other types of OI but she does have intraosseous calcification that causes the soft tissue in her arm to become hard like bone.
“She is one in a million,” said Monika. “It’s very rare.”
According to Harrington, the gene affected in those who live with OI is one that helps to produce collagen in the bone. “When these children have these gene changes, they either have an abnormal type of this protein or a decreased amount of it, which makes their bones not so strong,” said the hospital’s senior endocrine fellow, who will join the hospital’s staff in July.
Zooey is the 83rd genetically confirmed case of Type 5 OI in the world. Her parents, however, aren’t carriers. This means that a spontaneous gene mutation occurred in utero, causing the girl with the cherubic face to fracture easily.
“Us lifting her up from her crib would break her ribs,” said Monika. “She has had somewhere around eight to 10 spinal compression fractures and those were happening just because she was gaining weight. Her spine wasn’t able to support her increasing body weight.”
Despite her broken bones, Zooey wasn’t an overly fussy baby but she did sleep a lot, said Monika. Zooey is also small and has been since birth. In hindsight, these were indicators something was wrong, but the family simply didn’t know.
In December 2013, Zooey began treatment at the Hospital for Sick Children. She was first admitted for intravenous treatment; as she grew stronger, she received a portacath, allowing her to take “bone juice” as an outpatient.
Depending on the severity, children with OI receive a group of medications. Those, said Harrington, are bisphosphonates that increase bone density in order to reduce a child’s risk of fractures. Zooey’s treatment includes doses of pamidronate. While it took some time to take effect, a recent scan shows that her spine has fully remodelled.
“The vertebrae weren’t normal but vertebrae that were as flat as pancakes were actually taking shape again so her spine, as far as we know, has been doing well,” she said.
Zooey’s treatment takes place over the course of three days every eight weeks. After each treatment, Monika notices Zooey make huge developmental leaps. “It’s almost like her body is like, ‘Good, I got my bone juice.’”
Not all children with OI will require such extensive treatment, said Harrington, who is a member of Zooey’s health-care team at SickKids.
Zooey’s treatment is supplemented by physiotherapy and hydrotherapy which, said Harrington, ensure children with OI “are progressing in their developmental milestones appropriately.”
“Swimming is a really good activity for her and she loves it,” said Monika.
With stronger bones, Zooey’s next steps include learning to walk. “I can sit her on the stairs in front of me, hold her hands and she’ll stand up and sit down,” said her mom.
Zooey, however, will always have to be careful. A slip or fall will likely cause a bone fracture. Any trauma to the head results in a trip to the emergency room to rule out any skull fractures or other serious injuries.
OI is something that Zooey and her parents will have to cope with. But simply knowing the reason behind her fragile bones brings a level of comfort and relief to the Waterdown family.
A diagnosis of OI “provides a lot of relief around that,” said Harrington, adding, “It gets rid of some of the uncertainty and worry about why this is happening.”
The Schneiders are determined to raise awareness of the disorder in the community and among medical professionals. They say they have returned to McMaster Children’s Hospital to speak with representatives from a number of departments to ensure that other families with children living with OI don’t face similar situations.
“We don’t want another family to go through what we went through,” said Monika.
In a statement, McMaster Children’s Hospital said, “While we cannot speak to an individual circumstance due to issues of privacy and confidentiality, we can say that when patients and families come to McMaster Children’s Hospital with a concern about treatment, it is important for us to listen, work with the family and to provide feedback and education to our doctors and staff to ensure that we continue to improve on how to provide the best care.
“Rare and complex health issues are challenging and difficult to diagnose. Our priority is to ensure the best interests of the patient are considered first, and sometimes that means engaging outside agencies and community partners. We try to work with families to determine the best course of action with their input. Our goal is to provide compassionate, family-centered care, that respects privacy, and encourages open communication between the patient/family, and health-care providers.”
Zooey’s story is not unique, said Harrington. Despite medical advances and genetic testing, coming to a positive OI diagnosis can be challenging. However, “there is a greater understanding nowadays that there is a much bigger range of children who can have this,” noted the specialist at SickKids.
According to the American-based Osteogenesis Imperfecta Foundation, parents of children with OI can be falsely accused of abusing their child. The organization recommends parents carry documentation of the diagnosis, including a letter from the child’s primary care physician with the doctor’s contact information. Families are also encouraged to plan ahead and know how to address fractures that occur after hours, on weekends or holidays.
In addition to undergoing treatments at SickKids, Zooey and her parents have travelled to the Shriners Hospital for Children in Montreal, home to the world’s leading experts on OI.
“She is seen by the team there,” said Monika. “It’s just good because people from all over the world bring their kids to Montreal for treatment and assessment so why wouldn’t we go; they are just a car drive away.”
The Waterdown family has also joined a private Facebook group that helps connect families of children with OI. For the Schneiders, the forum has enabled them to bond with two Toronto area families with daughters living with brittle bone disease. Their relationship has blossomed to the point that the trio co-ordinates treatments, allowing the girls to be together at the hospital.
The hospital, too, is looking to build a support system for families. At the end of May, SickKids will host its first-ever OI Family Day, where families can come and meet others. Information about treatments and the latest in medical research will also be available, said Harrington.
“It’s good for them to see other kids with their condition, too, so they don’t feel alone,” said Monika, adding, “If another family is going through this, I want there to be people that they can reach out to.”
She’s only 23 months old, yet she has suffered 27 bone fractures. Despite her many injuries, Zooey Schneider’s spirit remains unbreakable.
At a glance, you wouldn’t know that Zooey lives with a rare genetic condition. The adorable toddler is all smiles as she prepares to dig into her Happy Meal at the McDonald’s location on Parkside Drive. Her smile grows wider as she is presented with a colourful plastic figurine with yellow wings that match her bright t-shirt and floral headband.
Zooey is the youngest member of the Schneider clan to wear yellow to mark Wishbone Day May 6 – an international campaign that aims to raise awareness of osteogenesis imperfecta (OI). Her mom Monika, dad Brad and grandparents are also sporting yellow on this day, which happened to coincide with the annual McDonald’s fundraising event.
McHappy Day is celebrated at more than 1,400 McDonald’s restaurants across the country each May and sees $1 from the sale of each Big Mac, Happy Meal and hot McCafé beverage go towards Ronald McDonald House Charities.
This year, the day-long event raised more than $4.6 million for the organization that provides a home for families with children undergoing care at a nearby hospital.
Ronald McDonald House proved to be an invaluable service for the Schneiders, who found comfort and support at the Toronto facility that is located just steps away from the Hospital for Sick Children, where their daughter was hospitalized on a number of occasions.
“It was incredible, absolutely incredible,” said Brad.
What’s most incredible, however, is Zooey’s resilience.
The Waterdown girl was only 11 weeks old when, after a bath, her collarbone broke. “She cried instantly and I knew something was wrong,” said Monika, who rushed her daughter to McMaster Children’s Hospital.
An x-ray of Zooey’s tiny body revealed more than a dozen fractures in various stages of healing, sparking an investigation into what caused the baby’s injuries.
That probe began innocently enough but quickly developed into a case of suspected child abuse. “They concluded that it was non-accidental injury,” alleged Monika, adding that she and her husband soon came under suspicion for causing their daughter’s injuries. The incident was reported to the authorities.
The Children’s Aid Society and Hamilton Police Service were called and conducted a thorough investigation, claimed Monika.
The Waterdown family was living a nightmare.
The Schneiders were placed under observation for weeks. They say they weren’t allowed to be alone with Zooey. Family and friends rallied, taking shifts to act as supervisors.
“We had so many offers from people who were willing to rearrange work schedules, move into our home, and give up time with their family just for us,” said Monika of the support she and Brad received.
Still, the parents were frantic. They were awaiting the results of genetic testing for osteogenesis imperfecta, one of the most common genetic causes of bone fragility, according to Dr. Jennifer Harrington of the Hospital for Sick Children’s Bone Health Centre. The tests, said Monika, yielded inconclusive results.
They sought help from their family physician, who was adamant a medical condition was to blame for Zooey’s numerous fractures. According to the Schneiders, their doctor made a referral to the Hospital for Sick Children and pleaded their case with the Children’s Aid Society.
“Time that should have been spent focusing on helping Zooey and finding out what was happening in her little body was consumed by meetings with CAS that literally went on for hours and hours,” said Monika, adding that the child welfare agency allegedly cautioned the family that Zooey would be placed into foster care should she suffer another break.
Then, Zooey broke again – a compression fracture in her spine. “We just right away went to Sick Kids because we knew the next step would be apprehension,” said Monika. “We didn’t have an appointment but we just basically begged and pleaded for them to help us.”
They did. By then, the police had concluded its investigation and, according to Monika, had determined there was no criminal element to their daughter’s injuries. CAS would remain involved until Zooey’s medical condition was identified and confirmed. At her first official appointment with doctors at the Toronto hospital’s Bone Health Centre, she was diagnosed with osteogenesis imperfecta (OI).
Also known as brittle bone disease, the disorder is variable with a number of different types. Further genetic testing revealed that Zooey suffers from Type 5, which means she doesn’t have bone deformities or bowing that are often associated with other types of OI but she does have intraosseous calcification that causes the soft tissue in her arm to become hard like bone.
“She is one in a million,” said Monika. “It’s very rare.”
According to Harrington, the gene affected in those who live with OI is one that helps to produce collagen in the bone. “When these children have these gene changes, they either have an abnormal type of this protein or a decreased amount of it, which makes their bones not so strong,” said the hospital’s senior endocrine fellow, who will join the hospital’s staff in July.
Zooey is the 83rd genetically confirmed case of Type 5 OI in the world. Her parents, however, aren’t carriers. This means that a spontaneous gene mutation occurred in utero, causing the girl with the cherubic face to fracture easily.
“Us lifting her up from her crib would break her ribs,” said Monika. “She has had somewhere around eight to 10 spinal compression fractures and those were happening just because she was gaining weight. Her spine wasn’t able to support her increasing body weight.”
Despite her broken bones, Zooey wasn’t an overly fussy baby but she did sleep a lot, said Monika. Zooey is also small and has been since birth. In hindsight, these were indicators something was wrong, but the family simply didn’t know.
In December 2013, Zooey began treatment at the Hospital for Sick Children. She was first admitted for intravenous treatment; as she grew stronger, she received a portacath, allowing her to take “bone juice” as an outpatient.
Depending on the severity, children with OI receive a group of medications. Those, said Harrington, are bisphosphonates that increase bone density in order to reduce a child’s risk of fractures. Zooey’s treatment includes doses of pamidronate. While it took some time to take effect, a recent scan shows that her spine has fully remodelled.
“The vertebrae weren’t normal but vertebrae that were as flat as pancakes were actually taking shape again so her spine, as far as we know, has been doing well,” she said.
Zooey’s treatment takes place over the course of three days every eight weeks. After each treatment, Monika notices Zooey make huge developmental leaps. “It’s almost like her body is like, ‘Good, I got my bone juice.’”
Not all children with OI will require such extensive treatment, said Harrington, who is a member of Zooey’s health-care team at SickKids.
Zooey’s treatment is supplemented by physiotherapy and hydrotherapy which, said Harrington, ensure children with OI “are progressing in their developmental milestones appropriately.”
“Swimming is a really good activity for her and she loves it,” said Monika.
With stronger bones, Zooey’s next steps include learning to walk. “I can sit her on the stairs in front of me, hold her hands and she’ll stand up and sit down,” said her mom.
Zooey, however, will always have to be careful. A slip or fall will likely cause a bone fracture. Any trauma to the head results in a trip to the emergency room to rule out any skull fractures or other serious injuries.
OI is something that Zooey and her parents will have to cope with. But simply knowing the reason behind her fragile bones brings a level of comfort and relief to the Waterdown family.
A diagnosis of OI “provides a lot of relief around that,” said Harrington, adding, “It gets rid of some of the uncertainty and worry about why this is happening.”
The Schneiders are determined to raise awareness of the disorder in the community and among medical professionals. They say they have returned to McMaster Children’s Hospital to speak with representatives from a number of departments to ensure that other families with children living with OI don’t face similar situations.
“We don’t want another family to go through what we went through,” said Monika.
In a statement, McMaster Children’s Hospital said, “While we cannot speak to an individual circumstance due to issues of privacy and confidentiality, we can say that when patients and families come to McMaster Children’s Hospital with a concern about treatment, it is important for us to listen, work with the family and to provide feedback and education to our doctors and staff to ensure that we continue to improve on how to provide the best care.
“Rare and complex health issues are challenging and difficult to diagnose. Our priority is to ensure the best interests of the patient are considered first, and sometimes that means engaging outside agencies and community partners. We try to work with families to determine the best course of action with their input. Our goal is to provide compassionate, family-centered care, that respects privacy, and encourages open communication between the patient/family, and health-care providers.”
Zooey’s story is not unique, said Harrington. Despite medical advances and genetic testing, coming to a positive OI diagnosis can be challenging. However, “there is a greater understanding nowadays that there is a much bigger range of children who can have this,” noted the specialist at SickKids.
According to the American-based Osteogenesis Imperfecta Foundation, parents of children with OI can be falsely accused of abusing their child. The organization recommends parents carry documentation of the diagnosis, including a letter from the child’s primary care physician with the doctor’s contact information. Families are also encouraged to plan ahead and know how to address fractures that occur after hours, on weekends or holidays.
In addition to undergoing treatments at SickKids, Zooey and her parents have travelled to the Shriners Hospital for Children in Montreal, home to the world’s leading experts on OI.
“She is seen by the team there,” said Monika. “It’s just good because people from all over the world bring their kids to Montreal for treatment and assessment so why wouldn’t we go; they are just a car drive away.”
The Waterdown family has also joined a private Facebook group that helps connect families of children with OI. For the Schneiders, the forum has enabled them to bond with two Toronto area families with daughters living with brittle bone disease. Their relationship has blossomed to the point that the trio co-ordinates treatments, allowing the girls to be together at the hospital.
The hospital, too, is looking to build a support system for families. At the end of May, SickKids will host its first-ever OI Family Day, where families can come and meet others. Information about treatments and the latest in medical research will also be available, said Harrington.
“It’s good for them to see other kids with their condition, too, so they don’t feel alone,” said Monika, adding, “If another family is going through this, I want there to be people that they can reach out to.”
She’s only 23 months old, yet she has suffered 27 bone fractures. Despite her many injuries, Zooey Schneider’s spirit remains unbreakable.
At a glance, you wouldn’t know that Zooey lives with a rare genetic condition. The adorable toddler is all smiles as she prepares to dig into her Happy Meal at the McDonald’s location on Parkside Drive. Her smile grows wider as she is presented with a colourful plastic figurine with yellow wings that match her bright t-shirt and floral headband.
Zooey is the youngest member of the Schneider clan to wear yellow to mark Wishbone Day May 6 – an international campaign that aims to raise awareness of osteogenesis imperfecta (OI). Her mom Monika, dad Brad and grandparents are also sporting yellow on this day, which happened to coincide with the annual McDonald’s fundraising event.
McHappy Day is celebrated at more than 1,400 McDonald’s restaurants across the country each May and sees $1 from the sale of each Big Mac, Happy Meal and hot McCafé beverage go towards Ronald McDonald House Charities.
This year, the day-long event raised more than $4.6 million for the organization that provides a home for families with children undergoing care at a nearby hospital.
Ronald McDonald House proved to be an invaluable service for the Schneiders, who found comfort and support at the Toronto facility that is located just steps away from the Hospital for Sick Children, where their daughter was hospitalized on a number of occasions.
“It was incredible, absolutely incredible,” said Brad.
What’s most incredible, however, is Zooey’s resilience.
The Waterdown girl was only 11 weeks old when, after a bath, her collarbone broke. “She cried instantly and I knew something was wrong,” said Monika, who rushed her daughter to McMaster Children’s Hospital.
An x-ray of Zooey’s tiny body revealed more than a dozen fractures in various stages of healing, sparking an investigation into what caused the baby’s injuries.
That probe began innocently enough but quickly developed into a case of suspected child abuse. “They concluded that it was non-accidental injury,” alleged Monika, adding that she and her husband soon came under suspicion for causing their daughter’s injuries. The incident was reported to the authorities.
The Children’s Aid Society and Hamilton Police Service were called and conducted a thorough investigation, claimed Monika.
The Waterdown family was living a nightmare.
The Schneiders were placed under observation for weeks. They say they weren’t allowed to be alone with Zooey. Family and friends rallied, taking shifts to act as supervisors.
“We had so many offers from people who were willing to rearrange work schedules, move into our home, and give up time with their family just for us,” said Monika of the support she and Brad received.
Still, the parents were frantic. They were awaiting the results of genetic testing for osteogenesis imperfecta, one of the most common genetic causes of bone fragility, according to Dr. Jennifer Harrington of the Hospital for Sick Children’s Bone Health Centre. The tests, said Monika, yielded inconclusive results.
They sought help from their family physician, who was adamant a medical condition was to blame for Zooey’s numerous fractures. According to the Schneiders, their doctor made a referral to the Hospital for Sick Children and pleaded their case with the Children’s Aid Society.
“Time that should have been spent focusing on helping Zooey and finding out what was happening in her little body was consumed by meetings with CAS that literally went on for hours and hours,” said Monika, adding that the child welfare agency allegedly cautioned the family that Zooey would be placed into foster care should she suffer another break.
Then, Zooey broke again – a compression fracture in her spine. “We just right away went to Sick Kids because we knew the next step would be apprehension,” said Monika. “We didn’t have an appointment but we just basically begged and pleaded for them to help us.”
They did. By then, the police had concluded its investigation and, according to Monika, had determined there was no criminal element to their daughter’s injuries. CAS would remain involved until Zooey’s medical condition was identified and confirmed. At her first official appointment with doctors at the Toronto hospital’s Bone Health Centre, she was diagnosed with osteogenesis imperfecta (OI).
Also known as brittle bone disease, the disorder is variable with a number of different types. Further genetic testing revealed that Zooey suffers from Type 5, which means she doesn’t have bone deformities or bowing that are often associated with other types of OI but she does have intraosseous calcification that causes the soft tissue in her arm to become hard like bone.
“She is one in a million,” said Monika. “It’s very rare.”
According to Harrington, the gene affected in those who live with OI is one that helps to produce collagen in the bone. “When these children have these gene changes, they either have an abnormal type of this protein or a decreased amount of it, which makes their bones not so strong,” said the hospital’s senior endocrine fellow, who will join the hospital’s staff in July.
Zooey is the 83rd genetically confirmed case of Type 5 OI in the world. Her parents, however, aren’t carriers. This means that a spontaneous gene mutation occurred in utero, causing the girl with the cherubic face to fracture easily.
“Us lifting her up from her crib would break her ribs,” said Monika. “She has had somewhere around eight to 10 spinal compression fractures and those were happening just because she was gaining weight. Her spine wasn’t able to support her increasing body weight.”
Despite her broken bones, Zooey wasn’t an overly fussy baby but she did sleep a lot, said Monika. Zooey is also small and has been since birth. In hindsight, these were indicators something was wrong, but the family simply didn’t know.
In December 2013, Zooey began treatment at the Hospital for Sick Children. She was first admitted for intravenous treatment; as she grew stronger, she received a portacath, allowing her to take “bone juice” as an outpatient.
Depending on the severity, children with OI receive a group of medications. Those, said Harrington, are bisphosphonates that increase bone density in order to reduce a child’s risk of fractures. Zooey’s treatment includes doses of pamidronate. While it took some time to take effect, a recent scan shows that her spine has fully remodelled.
“The vertebrae weren’t normal but vertebrae that were as flat as pancakes were actually taking shape again so her spine, as far as we know, has been doing well,” she said.
Zooey’s treatment takes place over the course of three days every eight weeks. After each treatment, Monika notices Zooey make huge developmental leaps. “It’s almost like her body is like, ‘Good, I got my bone juice.’”
Not all children with OI will require such extensive treatment, said Harrington, who is a member of Zooey’s health-care team at SickKids.
Zooey’s treatment is supplemented by physiotherapy and hydrotherapy which, said Harrington, ensure children with OI “are progressing in their developmental milestones appropriately.”
“Swimming is a really good activity for her and she loves it,” said Monika.
With stronger bones, Zooey’s next steps include learning to walk. “I can sit her on the stairs in front of me, hold her hands and she’ll stand up and sit down,” said her mom.
Zooey, however, will always have to be careful. A slip or fall will likely cause a bone fracture. Any trauma to the head results in a trip to the emergency room to rule out any skull fractures or other serious injuries.
OI is something that Zooey and her parents will have to cope with. But simply knowing the reason behind her fragile bones brings a level of comfort and relief to the Waterdown family.
A diagnosis of OI “provides a lot of relief around that,” said Harrington, adding, “It gets rid of some of the uncertainty and worry about why this is happening.”
The Schneiders are determined to raise awareness of the disorder in the community and among medical professionals. They say they have returned to McMaster Children’s Hospital to speak with representatives from a number of departments to ensure that other families with children living with OI don’t face similar situations.
“We don’t want another family to go through what we went through,” said Monika.
In a statement, McMaster Children’s Hospital said, “While we cannot speak to an individual circumstance due to issues of privacy and confidentiality, we can say that when patients and families come to McMaster Children’s Hospital with a concern about treatment, it is important for us to listen, work with the family and to provide feedback and education to our doctors and staff to ensure that we continue to improve on how to provide the best care.
“Rare and complex health issues are challenging and difficult to diagnose. Our priority is to ensure the best interests of the patient are considered first, and sometimes that means engaging outside agencies and community partners. We try to work with families to determine the best course of action with their input. Our goal is to provide compassionate, family-centered care, that respects privacy, and encourages open communication between the patient/family, and health-care providers.”
Zooey’s story is not unique, said Harrington. Despite medical advances and genetic testing, coming to a positive OI diagnosis can be challenging. However, “there is a greater understanding nowadays that there is a much bigger range of children who can have this,” noted the specialist at SickKids.
According to the American-based Osteogenesis Imperfecta Foundation, parents of children with OI can be falsely accused of abusing their child. The organization recommends parents carry documentation of the diagnosis, including a letter from the child’s primary care physician with the doctor’s contact information. Families are also encouraged to plan ahead and know how to address fractures that occur after hours, on weekends or holidays.
In addition to undergoing treatments at SickKids, Zooey and her parents have travelled to the Shriners Hospital for Children in Montreal, home to the world’s leading experts on OI.
“She is seen by the team there,” said Monika. “It’s just good because people from all over the world bring their kids to Montreal for treatment and assessment so why wouldn’t we go; they are just a car drive away.”
The Waterdown family has also joined a private Facebook group that helps connect families of children with OI. For the Schneiders, the forum has enabled them to bond with two Toronto area families with daughters living with brittle bone disease. Their relationship has blossomed to the point that the trio co-ordinates treatments, allowing the girls to be together at the hospital.
The hospital, too, is looking to build a support system for families. At the end of May, SickKids will host its first-ever OI Family Day, where families can come and meet others. Information about treatments and the latest in medical research will also be available, said Harrington.
“It’s good for them to see other kids with their condition, too, so they don’t feel alone,” said Monika, adding, “If another family is going through this, I want there to be people that they can reach out to.”