Frank Walks for Children and Families, Just Like These...
Kayden's Story
Kayden is a 9-year-old boy who has had many challenges in his young life. He was born with a rare genetic disorder causing an incredible number of complex medical issues. His parents have travelled all over North America to find solutions. Kayden is nonverbal and until recently had difficulty being weight bearing, and he has lived with pain and frustration. Yet, like most boys, Kayden loves music, his Ipad and his favorite movie is Toy Story.
Due to his underlying medical issues, Kayden developed a severe (early onset) scoliosis – or a curvature of the spine. In Kayden’s case, it was a double curvature in the shape of an S. After working with bracing with local physicians without obtaining the desired results, they referred Kayden to Shriners Hospitals for Children – Canada. Due to his age and multiple other issues, Kayden was prescribed an aggressive nighttime brace that allowed him the benefit of the brace while sleeping comfortably. This slowed the progression of the scoliosis for one year. But as Kayden continued to grow he was also prescribed a day brace which affected his ability to move and to access the things and activities he liked. This created more frustration for him and his parents and at his next growth spurt the scoliosis worsened dramatically.
At this point, Kayden had reached in an age range where he would be an ideal candidate to have surgery to correct his scoliosis using growing rods that can be extended surgically to match the growth of the child. "The surgery has really changed Kayden’s life, he does not have to wear a brace anymore, his spine is 100% straight and we have been able to maintain as much physiotherapy as possible during the pandemic. He has healed extremely well", shares Sylvie Fortier, Kayden’s mom. She goes on to say: "This has changed his life, he sleeps better, he has no pain. We see a huge shift with his quality of life because he is more content, happier and curious about things". Kayden’s family is grateful to the WA WA Shriners of Sasktachewan and Shriners Hospitals for Children - Canada for this life changing surgery for Kayden".
"Our spine surgeon at Canada Shriners Hospital, Dr. Jean Ouellet, was so reassuring and considerate to my medically complex child. Dr. Ouellet made us feel that Kayden deserved to feel better and he and the team would do their very best for Kayden and for the whole entire family", shared Sylvie.
Prior to the surgery Kayden was thin, struggling all the time for everything – sitting up was an effort, standing up was a struggle. Today he can move around freely, play with his toys, he is able to go in his walker to learn how to walk. He no longer requires his nighttime feedings, now that his internal organs are not compressed, he can digest properly so he can feed during the day.
"As parents, we feel that we have taken one more step in the right direction for our son – we just really did a good thing for our child and if it is good for Kayden it is good for our family. We hope that our child will be happy, that he reaches his own potential, that he stays healthy and he continues to thrive".
Dr. Ouellet has been collaborating with a fellow orthopedic surgeon at Jim Pattison Hospital to monitor his spine locally. When required, Kayden will return to Shriners Hospitals for Children Canada in order for the growing rods that support his spine to be extended surgically.
"It is so wonderful that here in Canada we have access to great local care, but that we also blessed to have our own Shriners Hospital for Children that is dedicated to help children with deep complexities manage their orthopedic needs, concludes Kayden’s mom Sylvie."
Due to his underlying medical issues, Kayden developed a severe (early onset) scoliosis – or a curvature of the spine. In Kayden’s case, it was a double curvature in the shape of an S. After working with bracing with local physicians without obtaining the desired results, they referred Kayden to Shriners Hospitals for Children – Canada. Due to his age and multiple other issues, Kayden was prescribed an aggressive nighttime brace that allowed him the benefit of the brace while sleeping comfortably. This slowed the progression of the scoliosis for one year. But as Kayden continued to grow he was also prescribed a day brace which affected his ability to move and to access the things and activities he liked. This created more frustration for him and his parents and at his next growth spurt the scoliosis worsened dramatically.
At this point, Kayden had reached in an age range where he would be an ideal candidate to have surgery to correct his scoliosis using growing rods that can be extended surgically to match the growth of the child. "The surgery has really changed Kayden’s life, he does not have to wear a brace anymore, his spine is 100% straight and we have been able to maintain as much physiotherapy as possible during the pandemic. He has healed extremely well", shares Sylvie Fortier, Kayden’s mom. She goes on to say: "This has changed his life, he sleeps better, he has no pain. We see a huge shift with his quality of life because he is more content, happier and curious about things". Kayden’s family is grateful to the WA WA Shriners of Sasktachewan and Shriners Hospitals for Children - Canada for this life changing surgery for Kayden".
"Our spine surgeon at Canada Shriners Hospital, Dr. Jean Ouellet, was so reassuring and considerate to my medically complex child. Dr. Ouellet made us feel that Kayden deserved to feel better and he and the team would do their very best for Kayden and for the whole entire family", shared Sylvie.
Prior to the surgery Kayden was thin, struggling all the time for everything – sitting up was an effort, standing up was a struggle. Today he can move around freely, play with his toys, he is able to go in his walker to learn how to walk. He no longer requires his nighttime feedings, now that his internal organs are not compressed, he can digest properly so he can feed during the day.
"As parents, we feel that we have taken one more step in the right direction for our son – we just really did a good thing for our child and if it is good for Kayden it is good for our family. We hope that our child will be happy, that he reaches his own potential, that he stays healthy and he continues to thrive".
Dr. Ouellet has been collaborating with a fellow orthopedic surgeon at Jim Pattison Hospital to monitor his spine locally. When required, Kayden will return to Shriners Hospitals for Children Canada in order for the growing rods that support his spine to be extended surgically.
"It is so wonderful that here in Canada we have access to great local care, but that we also blessed to have our own Shriners Hospital for Children that is dedicated to help children with deep complexities manage their orthopedic needs, concludes Kayden’s mom Sylvie."
What do you think makes Shriners Hospital unique?
One on one quality of care and dedication. Thorough, precise dedication that they are able to give to their patients. As a parent you don’t feel rushed, that your child really matters and that they will do their very best for your child. Surgery was a difficult decision, but the staff keep it real and honest - yet positive. We felt taken care of and told the truth. Special touch at Shriners that you feel welcome, the care and compassion is phenomenal. Communication with the parents is taken very seriously and parents are part of the process with the child.Tells us about traveling to Montreal for treatment
For all the trips we have made to Shriners Hospital since 2018 Shriner, Paul, has been there to make sure our flights are booked and coordinate with the hospital for our hotel. Paul and the WA WA Shriners are always there for us. If that is not enough, we land in Montreal there is Karnak Shriner Driver driver waiting for us at the airport – we find the man with the Fez who takes us all the way into the hotel and makes sure that you we are checked in. When Shriners see the worry in our faces they say it is going to be Ok – and because they say that it is going to be OK with such calm and conviction – we believe it.Raoul's Story
Raoul was born in 2009, in Saskatoon, Saskatchewan. He was diagnosed with Arthrogryposis at birth. Arthrogryposis multiplex congenita (AMC), also known simply as arthrogryposis, Arthrogryposis is a rare condition, present at birth, that affects 1 in 3,000 babies. This disorder is characterized by joint contractions that restrict movement in several areas, including the arms, legs and spine Shriners Hospitals for Children-Canada is a leading center in Canada in the treatment and research on Arthrogryposis offering the only family-centered multi-disciplinary clinic to support children and families living with this condition.
Raoul had a first surgery when he was a year and a half old to correct club feet and then was in casts for 3 months. In order to give Raoul time to grow and see how he developed, any further surgeries were tabled. In addition, as a mom, Brenda wanted Raoul to be involved in decisions that would be life-changing for him. Growing up, Raoul was able to get around on his own by crawling, and then, when just before entering kindergarten at the age of 5 he was fitted with his first wheelchair.
Driving home from daycare one day, just before his 7th birthday, Raoul stated to his mom that now that he was turning 7 he was going to be able to walk. This sparked a lot of discussion and a lot of research to find the best options for treatment. When Brenda understood set out to find out how this could happen. With the encouragement of family members, she decided to ask Shriners Hospitals for Children – Canada for a second opinion. Although she generally knew about Shriners and their work, prior to the application, she had set this possibility aside previously concerned about all the expenses related such a trip.
The local WA WA Shriners took care of the referral, transportation and all costs to go to the Hospital and Raoul was seen at Shriners Hospitals for Children for the first time in 2016. "During that first visit, it was the first time that I realized that arthrogryposis was more common than I thought and amazed that there was an actual specialty arthrogryposis clinic," recalls Brenda. "Seeing that there were other families that were living with the condition was somehow reassuring."
After this first appointment, the surgeries were carefully planned. Orthopedic surgeon Reggie Hamdy even looked into the idea of performing the surgeries in Saskatchewan, however, due to the number of surgeries and the intense physiotherapy required, the family made the big decision to come spend 2 months in Montreal.
Brenda shares that, "Raoul wanted to walk and I was very upfront with him, made sure that he understood that he was going to have to work hard and it was going to be painful." She said, "I will bring you there, the doctor will do the surgery, the nurses will do the aftercare, but you will have to do the physiotherapy. You will have to do the work. As you learn how to walk, you are going to fall many times and have to get up again before you can walk."
Originally, there were supposed to be two surgeries, but as can be the case with complex conditions, two surgeries turned into four and the 2-month stay turned into 3. Brenda and Raoul had left three siblings at home and it was extremely hard on them to be away from each other. But Brenda and Raoul stuck to the plan so he could walk. During the stay in Montreal, Brenda’s eldest daughter was able to come for a week’s visit as a surprise.
After a lot of therapy, working through the fear of pain and the fear of the unknown, one day Raoul took his first steps at the parallel bars. "The first time he got up and walked with the bars, it was emotional, I cried quite a bit. I was extremely happy," recalls Brenda. She goes on to say, "Raoul was extremely scared to try, but once he got comfortable with each new challenge and a bit of tough love, he powered through it."
Brenda concluded, "leaving the hospital was extremely emotional for us because we were leaving a whole new family that had gone through so much with us."
Today, Raoul is turning into an amazing pre-teen boy. He does daily stretches at home, including what he was taught at the hospital. He also does stretches and uses a "stander" at school. Raoul has grown, therefore he is currently awaiting new braces to continue his progress walking.
Raoul had a first surgery when he was a year and a half old to correct club feet and then was in casts for 3 months. In order to give Raoul time to grow and see how he developed, any further surgeries were tabled. In addition, as a mom, Brenda wanted Raoul to be involved in decisions that would be life-changing for him. Growing up, Raoul was able to get around on his own by crawling, and then, when just before entering kindergarten at the age of 5 he was fitted with his first wheelchair.
Driving home from daycare one day, just before his 7th birthday, Raoul stated to his mom that now that he was turning 7 he was going to be able to walk. This sparked a lot of discussion and a lot of research to find the best options for treatment. When Brenda understood set out to find out how this could happen. With the encouragement of family members, she decided to ask Shriners Hospitals for Children – Canada for a second opinion. Although she generally knew about Shriners and their work, prior to the application, she had set this possibility aside previously concerned about all the expenses related such a trip.
The local WA WA Shriners took care of the referral, transportation and all costs to go to the Hospital and Raoul was seen at Shriners Hospitals for Children for the first time in 2016. "During that first visit, it was the first time that I realized that arthrogryposis was more common than I thought and amazed that there was an actual specialty arthrogryposis clinic," recalls Brenda. "Seeing that there were other families that were living with the condition was somehow reassuring."
After this first appointment, the surgeries were carefully planned. Orthopedic surgeon Reggie Hamdy even looked into the idea of performing the surgeries in Saskatchewan, however, due to the number of surgeries and the intense physiotherapy required, the family made the big decision to come spend 2 months in Montreal.
Brenda shares that, "Raoul wanted to walk and I was very upfront with him, made sure that he understood that he was going to have to work hard and it was going to be painful." She said, "I will bring you there, the doctor will do the surgery, the nurses will do the aftercare, but you will have to do the physiotherapy. You will have to do the work. As you learn how to walk, you are going to fall many times and have to get up again before you can walk."
Originally, there were supposed to be two surgeries, but as can be the case with complex conditions, two surgeries turned into four and the 2-month stay turned into 3. Brenda and Raoul had left three siblings at home and it was extremely hard on them to be away from each other. But Brenda and Raoul stuck to the plan so he could walk. During the stay in Montreal, Brenda’s eldest daughter was able to come for a week’s visit as a surprise.
After a lot of therapy, working through the fear of pain and the fear of the unknown, one day Raoul took his first steps at the parallel bars. "The first time he got up and walked with the bars, it was emotional, I cried quite a bit. I was extremely happy," recalls Brenda. She goes on to say, "Raoul was extremely scared to try, but once he got comfortable with each new challenge and a bit of tough love, he powered through it."
Brenda concluded, "leaving the hospital was extremely emotional for us because we were leaving a whole new family that had gone through so much with us."
Today, Raoul is turning into an amazing pre-teen boy. He does daily stretches at home, including what he was taught at the hospital. He also does stretches and uses a "stander" at school. Raoul has grown, therefore he is currently awaiting new braces to continue his progress walking.
Matthew's Story
Matthew was born with a mild case of spina biffida and scoliosis. The additional factors of his condition truly came out when he was scheduled for his first surgery. Matthew did not respond to anesthesia or to any pain medication. Following this episode, nerve issues started to become evident and Matthew started to change. The first surgery tuned into 3 surgeries, he developed a club foot which kept worsening. He had not been born with a club foot. Locally, all efforts were made to correct the club foot. The issue was not neurological, and we were afraid of more surgery. He wore a metal brace to hold his foot in place so that he could walk, but once that broke, another solution had to be found. The family searched for answers and found some in the US which were cost prohibitive.
What was your first experience like at Shriners Hospitals for Children? Matthew’s grandparents live in Mexico and help the local Shriners Hospital there and they suggested to go to Shriners Hospitals for Children – Canada. The family had already filled in an application and with the support of the local WA WA Shriners they were flown to Montreal where they met with neurosurgeon Dr. Jean-Pierre Farmer and orthopedic surgeon Dr. Reggie Hamdy. They also met with cast technician and nurse Pierre who noticed the sores on Matthew’s feet and told Matthews mom that they would help with that as well. At this point, Matthew’s foot was twisted inwards and to the side, making him walk on his ankle and he therefore had to use a wheelchair.
It was decided by the team with Kim that the best way to treat Matthew was to do serial casting which would avoid any surgery. This meant 12 weeks casting going back and forth to Montreal. Each week, a new cast would be put on, gradually correcting the club foot. In this procedure, the surgeon slowly massages and moves the foot into a corrected position and the cast ensures that it able to stay that way until the following cast continues to correct the foot.
In addition, Matthew’s left leg from the knee down has limited sensation and over the years his right foot compensated. His toes at first curled under from gripping the ground for balance. Then his arch was compromised. The cast on his right foot was to help flatten his foot. He wears braces on both feet too. Thanks to Pierre, during the first few weeks, an opening would be left at the bottom of the cast to care for Matthews sores. It only took a few weeks and the sores that had been haunting Matthew for so long were gone. At the end of 12 weeks, Matthew had band new braces.
Towards the end of the casting, Mathew celebrated his birthday there at the hospital. We made everybody cupcakes for his birthday. He and his mom love baking and they decided to celebrate by baking and decorating cupcakes for the staff. Two years ago he went for 2 braces
What was your first experience like at Shriners Hospitals for Children? Matthew’s grandparents live in Mexico and help the local Shriners Hospital there and they suggested to go to Shriners Hospitals for Children – Canada. The family had already filled in an application and with the support of the local WA WA Shriners they were flown to Montreal where they met with neurosurgeon Dr. Jean-Pierre Farmer and orthopedic surgeon Dr. Reggie Hamdy. They also met with cast technician and nurse Pierre who noticed the sores on Matthew’s feet and told Matthews mom that they would help with that as well. At this point, Matthew’s foot was twisted inwards and to the side, making him walk on his ankle and he therefore had to use a wheelchair.
It was decided by the team with Kim that the best way to treat Matthew was to do serial casting which would avoid any surgery. This meant 12 weeks casting going back and forth to Montreal. Each week, a new cast would be put on, gradually correcting the club foot. In this procedure, the surgeon slowly massages and moves the foot into a corrected position and the cast ensures that it able to stay that way until the following cast continues to correct the foot.
In addition, Matthew’s left leg from the knee down has limited sensation and over the years his right foot compensated. His toes at first curled under from gripping the ground for balance. Then his arch was compromised. The cast on his right foot was to help flatten his foot. He wears braces on both feet too. Thanks to Pierre, during the first few weeks, an opening would be left at the bottom of the cast to care for Matthews sores. It only took a few weeks and the sores that had been haunting Matthew for so long were gone. At the end of 12 weeks, Matthew had band new braces.
Towards the end of the casting, Mathew celebrated his birthday there at the hospital. We made everybody cupcakes for his birthday. He and his mom love baking and they decided to celebrate by baking and decorating cupcakes for the staff. Two years ago he went for 2 braces
What did it mean to you that the doctors at the Shriners Hospital listened to your concerns and found a solution that didn't involve surgery?
We never knew who Matthew would be when we woke up from anesthesia. It was frightening. To hear that they could fix it without surgery was such a relief. To be involved in the decision process was empowering. Matthew will have to go through more serial casting as he grows as the club foot can come back, but that is a better alternative than surgery.How did Matthew feel about the Hospital?
Matthew thought it was great, loved the attention. He got to pick the colour of the casts. He could pick any colour and would often have two colours! We were always seeing doctors or a physician so that was normal for him. Until we got to Shriners and met Pierre, no one knew what to do with his sores. I would cut off the dead skin each night. It changed his life.How did this change Matthew
It made Matthew just a regular kid. He fits in and he can walk. Loves dinosaurs and dragons. One of the boys on the farm.What impact did it have on you?
As a mom, it takes the stress off. I don’t have to worry about what to do next. I just call Audra the transport coordinator at the hospital and our Shriner in Saskatoon and they take care of everything. I loved the fact that Shriners did not force surgery and found another solution, and I appreciated so much that I was involved in the decisions.How do you feel when you see a Shriner, like Frank, take on such a challenge (Walking for Children)?
I am thankful. As a mom of a handicapped child, I want to know what made him want to do this? Why do kids mean so much to him? He is giving a voice to our children, it is encouraging for us as parents and for our children. He is a role model. In my family our motto is, "Don’t tell me what you can’t do, tell me what you can do." Frank is living this motto.Jordyn's Story
We only found out about Jordyn’s condition she was around 5 years old after her third break. She first fractured her wrist when she was 2 and had fractured her leg twice before she was 5. Our pediatrician who follows another family with OI said she seem some similarities and decided to order bloodwork for testing. Jordyn was diagnosed with Osteogenesis Imperfecta (Brittle bone disease). She falls in between Type 1 and 4. She is considered to have a mild form of this condition so she has not been faced with most of the physical disabilities. Jordyn’s height and weight have always been at an appropriate percentile for her age so there was no concerns with growth. Apart from her fractures we still struggle with some lung and skin issues and hypermobility in her joints. Fingers crossed she hasn’t had a break for while.
How did you get involved with Shriners Hospitals for Children?
Our pediatrician after diagnosis sent the referral. We were told that is the place to go in Canada, and that this hospital was the leader in this rare disease. Which it most certainly is. We started with yearly checkups and monitoring of Jordyn. The Shriners Hospital has an OI conference which brings together all the professionals evolved in the patients care. So after testing and examinations, they all gather together and discuss with the family the patients condition and treatment plan. Eventually we found out that Jordyn needed surgery to correct her bone growth in her lower legs. She had metal plates placed temporarily to correct the situation in Montreal. However, with COVID, the two hospitals worked together and we went to the Jim Pattisson hospital in Saskatoon for the removal.How did you cope with learning about this disease?
We came in to it so blind and knew nothing about OI. Being told specialist were all the way in Montreal was stressful. But after our initial visit with the OI conference where everyone comes together was amazing as parents because we felt the support, we felt involved and we could ask all our questions. There are also other families dealing with the same issues at the OI Conferences. We met many families over the years and continue to stay in contact with them. This has also helped a lot. We definitely do not feel alone.How is Jordyn coping?
In the beginning, Jordyn was confused and didn’t understand why she wasn’t able to certain activities or why she would keep getting fractures. But having our yearly checkups at the Canada Shriners Hospital in Montreal she was able to met other kids at the hospital and it didn’t matter who was there for what… they were just able to be kids together. They could talk with each other. That was amazing to see.Do you have any favorite staff members?
We look forward to out visits in Montreal. It’s hard to pick a favorite staff member. From getting off the airplane and seeing a Shriner to the receptionists/nurses/her doctors/lab techs and rad techs. They all are so welcoming and helpful and do their best to make the journey as stress free as possible. Her nurse when she was there for surgery Kevin. He would sit and talk about his animals. Talk to her about life stuff, not just about her medication, but interested in her as a person. Trudy, as our Social Worker is amazing.Is there a moment in hospital that stays marked in your memory?
Staff always have smiles on their face. I remember Jordyn being nervous heading into surgery. She knew the technician who had taken her x-rays and that staff member took her under her wing, and calmed her in ways we could not before surgery. The staff really cares.What are Jordyn's favorite things to do?
Jordyn, enjoys reading, loves to be outside. Camping taking photos. Hanging out with friends.Your support helps to ensure that the Shriners Hospitals for Children Canada, and the Jim Pattison Children's Hospital Foundation, can continue to provide children and their families with the hope and medical attention they need.