- T
Kayden was born in Saskatoon in 2011 and is the son of Peter and Sylvie Kot and little brother of Edyn. He was born with complicated medical issues and was ‘severe failure to thrive’. Kayden has spent time and has under gone many tests in hospitals and therapy centers across North America, the first was in Toronto Sick Kids Hospital in December 2011 and the second was in Edmonton in 2012 at the Stollery Children's Hospital. Kayden spent approximately 1 month with his family beside him in Edmonton in Feb/March 2012 where he was finally given a diagnosis of a severe milk protein allergy. At this time Kayden was sent home on a specialized formula. Unfortunately when Kayden arrived home he began vomitting severely once again and still was not eating by mouth. As you could imagine the Kot family was very desperate and in search of anything that could help Kayden live a better life.
In April 2012 the Kot family found hope. That was in Denver, Colorado.
Through fundraising and the support of community and some government help the Kots were able to travel to the the STAR center in Denver, CO where Kayden and his family would spend approximately 3 months. Here Kayden received the amazing care and support of a team of feeding specialists and therapists. At this point it was recommended that Kayden under go surgery for insertion of a permanent feeding tube (G-tube) inserted directly into his stomach, this was a blessing as Kayden was able to get rid of the Nasal Gastric tube that was inserted into his nose and fed through to his stomach, a major source of discomfort for Kayden. At the end of June 2012 Kayden and his family came home, although Kayden had still not received a diagnosis for the source of his feeding issues and his "failure to thrive" things had slightly improved and the Kots had a plan for Kayden and the future in place.
In the fall of 2012 Kayden had a follow up visit at the STAR Center in Denver, CO with specialists to evaluate and adjust his therapeutic needs including his nutritional tube feedings. The search to resolve the underlining issue continued. Kayden was a bit happier and family life was a wee bit better. Everything seemed to be slowly heading in the right direction.
Wednesday May 29th 2013, was a day that would forever change Kayden's life and the Kots. Kayden appeared to have worst flu like symptoms that week and was very lethargic and so Kayden's mom (Sylvie) being obviously concerned brought Kayden to the pediatrician's office. The pediatrician examined Kayden and had bloodwork drawn, but Kayden and Sylvie were sent home as everything with Kayden seemed ok with no immediate concerns. Sylvie being relieved and brought Kayden home and did what any amazing mother would do and get some Pedialyte and broth into their son with the flu and waited for the blood work results, watching him closely. The blood results came in a couple of hour later and PANIC set in, the ER doctor on the phone communicating the results to Sylvie - where is Kayden? is he breathing? is he having seizures? has he had a stroke? Sylvie immediately ran to see and yelled, Kayden, Kayden but Kayden was the same, sleepy but somewhat alert. The doctor on the phone instructed Sylvie to get Kayden to the hospital IMMEDIATELY to re-run the bloodwork in hopes it was an error as the level he was showing was not viable to life.....it was showing Kayden's electrolyte levels were off the charts low, and he his life was in imminent danger.
Kayden was admitted to PICU with low sodium levels and immediately put on treatment to raise the levels.
The next day, it was learned by Kayden's family there are two types of Hyponatremia (extremely low sodium levels) the first being acute and the second being chronic. Kayden's case was chronic, with Kayden's uncontrolled vomitting over time Kayden's body had adjusted to lower and lower sodium levels to a point where he was barely "hanging on". With Kayden having chronic Hyponatremia his sodium levels should have been brought up slowly, which was unfortunately not the case as his were increased too rapidly. Sadly, the result was a severe neurological setback/brain injury, which left him completely paralyzed and all of the gains he had made were lost.
Kayden and his entire family were devastated They were sent home in July of 2013 from the Royal University Hospital, in Saskatoon, SK - Kayden being totally paralyzed, (not even blinking) and given no prognosis for Kayden and his future. Kayden's brain injury was extremely rare and no one really knew what the future held for him.
Determined to give Kayden the best possible future and quality of life. The Kots researched and through a therapist in Saskatoon were referred to a Neuro-movement Center located in San Rafael, California - Anat Baniel's Neuro-movement Center (ABM). The fall of 2013, Kayden still paralyzed from his brain injury, Sylvie and Kayden took their very first of approx. a dozen trips to the center. The team of ABM practitioners, including Anat Baniel worked with Kayden for a week of intensive therapy, and trip after trip, there were noticeable improvements in Kayden's disposition after his return home, so much so the Doctors in Saskatoon were very amazed by how far he had come. (from complete paralysis, to smiling, be able to sit up, to today now boot scooting (moving on his bum all over the house). It is important to note that none of these trips to San Rafael were covered by the government. Without the help of the community of Saskatoon, fundraising, friends, and family these trips would not have been possible.
Remember, this is only piece of the Kayden's very important story, through all the ABM trips Kayden still had no diagnosis. The ABM trips which began Kayden's journey post brain injury also led the Kots to New York City. As the therapists at the ABM Center were very concerned with Kayden's energy during the therapy sessions, Kayden was still vomiting. Anat Baniel recommended Kayden to a Neurologist in New York City. This was an even a bigger turning point in Kayden's life. After consults with the Dr. in New York, it was required that Kayden had a face to face consultation with her. In June of 2015, the Kots traveled to New York for a period of ~10 days. Here Kayden not only met the outstanding Neurologist but she lead Kayden and the Kots to the the person that finally changed the course of Kayden's nutritional needs and lead to control of Kayden's daily vomitting. To the world she is Dietitian - Nutritionist, to the Kots she is one of Kayden's most if not the most important person in his health journey and life. This Dietician was able to finally plan out a very comprehensive diet, labor intensive for the Kots, but life changing for Kayden. Kayden's food became a whole foods diet (real food, no formula). For almost 7 years Kayden continued on this diet. Full of costly vitamins and supplements that improved and healed Kayden's digestive system. Kayden continues to be fed be G Tube today but because of Geri Brewster in Mt. Kisco, New York - he is thriving and no longer vomits.
As stated above - all of this - is really part of Kayden's story In Oct. 2017 Kayden finally received a more concrete diagnosis. Through genetic testing a diagnosis of a very rare genetic disorder – Cardio-Facial-Cutaneous (CFC)Syndrome was confirmed by his Genetic team in Saskatoon, SK. There are very few other children with CFC in Canada and worldwide.
The Kots still face an uncertain future and there is no definitive prognosis for Kayden’s health. However, there is documentation that children
with this syndrome can make improvement in their global developmental delays.
The Kots, supported by family, friends and their local medical team, have travelled to the U.S. to access treatments not available through Sask. Health. They have been helped by the STAR Center in Denver, the Anat Baniel Method
facility in California and by a pediatric neurologist and nutrition/dietician specialist in NYC. Without these expensive treatments, the family does not believe Kayden would be with them today. Only a portion of these
treatments were approved by Sask. Health.
Therapy has been extremely helpful to Kayden and we are excited that he is now learning to walk with a walker. Hopefully his strength will improve to the point that the use of a walker will be integrated into his daily school life.
Kayden does not communicate with language but does make his wishes known and is able to understand what is said to him. He is still learning to accept food orally. He has now reached the 50th percentile for height and weight for his
age group. Although he still experiences seizures, they are currently under control with cannabis oil and pharmaceutical meds.
He is able to attend Holy Family with full-time aid as often as his schedule permits (working around his therapies and medical appointments) and he loves being with other children. Since the pandemic though he has not been able to
participate in school. His favorite things are cuddles with his family, playing outdoors, playing with his puppy Layla, exploring the house, pulling cords or anything down and he also his ‘Toy Story’ movies and his new bedroom.
The annual fundraiser that Kayden’s family and friends host to help pay for his many needs cannot be held this year due to Covid-19. In the past, the funds helped pay from additional therapies, specialized formulas for his diet and costs
for private appointments and devices.
Kayden is now 9 years old. He is able to weight bear and stand with help. He wears AFOs (braces) and specialized shoes. He is learning to use his specialized walker. As mentioned he is growing and catching up in his weight and height. He
continues to babble with his oral communication. He makes noises to make his wishes known. He is still only currently tube-fed. He is fed a highly specialized diet, the majority of which consists of formula which is not available in Canada so needs to be shipped from the US.
In 2017, Kayden received funding from the Saskatoon Shrine Club to be assessed at their Children’s Hospital in Montreal. This hospital specializes in orthopedic, muscular and neuromuscular conditions. On the first visit he was
diagnosed with severe spinal scoliosis and fitted for a custom brace. Another trip was made to pick up and adjust the brace. Additional follow-up trips determined that surgery was necessary to correct the curvatures in his spine. After
being postponed due to Covid-19, this surgery finally took place in September of 2020. The entire Kot family travelled to Montreal to be together during this extremely stressful time. They spent one month in Montreal. The surgery &
recovery went well and Kayden now has steel rods in his spine and no longer needs the spinal brace. This will help him with gaining core and muscular strength.
In August 2020, the Kots were fortunate to sell their bi-level home and purchase a bungalow. This allows the family to have a more accessible home for Kayden, and to make it easier for them to care for him.
At this time in addition to supporting Kayden's ever changing and increasing dietary needs as he gets older among additional supplements and supports for Kayden, the Kots are planning on renovations in their new home. This includes a ramp and lift in the garage for Kayden's access to outside and for mobility for his appointments, as well as a fully accessible bathroom, and a renovation to his bedroom to widen the door, as well as physio room.
There will be Facebook page group with more details to come around Kayden's fundraiser - Kisses For Kayden 2021. This will all be virtual with an auction of a large variety of items.
The Kots are extremely grateful for everyone- near and far- who have contributed and look forward to hearing more from all you as this pandemic passes us and we can all be together again! There are no words that will ever be enough for the continued difference you have made in Kayden's and our life.
In April 2012 the Kot family found hope. That was in Denver, Colorado.
Through fundraising and the support of community and some government help the Kots were able to travel to the the STAR center in Denver, CO where Kayden and his family would spend approximately 3 months. Here Kayden received the amazing care and support of a team of feeding specialists and therapists. At this point it was recommended that Kayden under go surgery for insertion of a permanent feeding tube (G-tube) inserted directly into his stomach, this was a blessing as Kayden was able to get rid of the Nasal Gastric tube that was inserted into his nose and fed through to his stomach, a major source of discomfort for Kayden. At the end of June 2012 Kayden and his family came home, although Kayden had still not received a diagnosis for the source of his feeding issues and his "failure to thrive" things had slightly improved and the Kots had a plan for Kayden and the future in place.
In the fall of 2012 Kayden had a follow up visit at the STAR Center in Denver, CO with specialists to evaluate and adjust his therapeutic needs including his nutritional tube feedings. The search to resolve the underlining issue continued. Kayden was a bit happier and family life was a wee bit better. Everything seemed to be slowly heading in the right direction.
Wednesday May 29th 2013, was a day that would forever change Kayden's life and the Kots. Kayden appeared to have worst flu like symptoms that week and was very lethargic and so Kayden's mom (Sylvie) being obviously concerned brought Kayden to the pediatrician's office. The pediatrician examined Kayden and had bloodwork drawn, but Kayden and Sylvie were sent home as everything with Kayden seemed ok with no immediate concerns. Sylvie being relieved and brought Kayden home and did what any amazing mother would do and get some Pedialyte and broth into their son with the flu and waited for the blood work results, watching him closely. The blood results came in a couple of hour later and PANIC set in, the ER doctor on the phone communicating the results to Sylvie - where is Kayden? is he breathing? is he having seizures? has he had a stroke? Sylvie immediately ran to see and yelled, Kayden, Kayden but Kayden was the same, sleepy but somewhat alert. The doctor on the phone instructed Sylvie to get Kayden to the hospital IMMEDIATELY to re-run the bloodwork in hopes it was an error as the level he was showing was not viable to life.....it was showing Kayden's electrolyte levels were off the charts low, and he his life was in imminent danger.
Kayden was admitted to PICU with low sodium levels and immediately put on treatment to raise the levels.
The next day, it was learned by Kayden's family there are two types of Hyponatremia (extremely low sodium levels) the first being acute and the second being chronic. Kayden's case was chronic, with Kayden's uncontrolled vomitting over time Kayden's body had adjusted to lower and lower sodium levels to a point where he was barely "hanging on". With Kayden having chronic Hyponatremia his sodium levels should have been brought up slowly, which was unfortunately not the case as his were increased too rapidly. Sadly, the result was a severe neurological setback/brain injury, which left him completely paralyzed and all of the gains he had made were lost.
Kayden and his entire family were devastated They were sent home in July of 2013 from the Royal University Hospital, in Saskatoon, SK - Kayden being totally paralyzed, (not even blinking) and given no prognosis for Kayden and his future. Kayden's brain injury was extremely rare and no one really knew what the future held for him.
Determined to give Kayden the best possible future and quality of life. The Kots researched and through a therapist in Saskatoon were referred to a Neuro-movement Center located in San Rafael, California - Anat Baniel's Neuro-movement Center (ABM). The fall of 2013, Kayden still paralyzed from his brain injury, Sylvie and Kayden took their very first of approx. a dozen trips to the center. The team of ABM practitioners, including Anat Baniel worked with Kayden for a week of intensive therapy, and trip after trip, there were noticeable improvements in Kayden's disposition after his return home, so much so the Doctors in Saskatoon were very amazed by how far he had come. (from complete paralysis, to smiling, be able to sit up, to today now boot scooting (moving on his bum all over the house). It is important to note that none of these trips to San Rafael were covered by the government. Without the help of the community of Saskatoon, fundraising, friends, and family these trips would not have been possible.
Remember, this is only piece of the Kayden's very important story, through all the ABM trips Kayden still had no diagnosis. The ABM trips which began Kayden's journey post brain injury also led the Kots to New York City. As the therapists at the ABM Center were very concerned with Kayden's energy during the therapy sessions, Kayden was still vomiting. Anat Baniel recommended Kayden to a Neurologist in New York City. This was an even a bigger turning point in Kayden's life. After consults with the Dr. in New York, it was required that Kayden had a face to face consultation with her. In June of 2015, the Kots traveled to New York for a period of ~10 days. Here Kayden not only met the outstanding Neurologist but she lead Kayden and the Kots to the the person that finally changed the course of Kayden's nutritional needs and lead to control of Kayden's daily vomitting. To the world she is Dietitian - Nutritionist, to the Kots she is one of Kayden's most if not the most important person in his health journey and life. This Dietician was able to finally plan out a very comprehensive diet, labor intensive for the Kots, but life changing for Kayden. Kayden's food became a whole foods diet (real food, no formula). For almost 7 years Kayden continued on this diet. Full of costly vitamins and supplements that improved and healed Kayden's digestive system. Kayden continues to be fed be G Tube today but because of Geri Brewster in Mt. Kisco, New York - he is thriving and no longer vomits.
As stated above - all of this - is really part of Kayden's story In Oct. 2017 Kayden finally received a more concrete diagnosis. Through genetic testing a diagnosis of a very rare genetic disorder – Cardio-Facial-Cutaneous (CFC)Syndrome was confirmed by his Genetic team in Saskatoon, SK. There are very few other children with CFC in Canada and worldwide.
The Kots still face an uncertain future and there is no definitive prognosis for Kayden’s health. However, there is documentation that children
with this syndrome can make improvement in their global developmental delays.
The Kots, supported by family, friends and their local medical team, have travelled to the U.S. to access treatments not available through Sask. Health. They have been helped by the STAR Center in Denver, the Anat Baniel Method
facility in California and by a pediatric neurologist and nutrition/dietician specialist in NYC. Without these expensive treatments, the family does not believe Kayden would be with them today. Only a portion of these
treatments were approved by Sask. Health.
Therapy has been extremely helpful to Kayden and we are excited that he is now learning to walk with a walker. Hopefully his strength will improve to the point that the use of a walker will be integrated into his daily school life.
Kayden does not communicate with language but does make his wishes known and is able to understand what is said to him. He is still learning to accept food orally. He has now reached the 50th percentile for height and weight for his
age group. Although he still experiences seizures, they are currently under control with cannabis oil and pharmaceutical meds.
He is able to attend Holy Family with full-time aid as often as his schedule permits (working around his therapies and medical appointments) and he loves being with other children. Since the pandemic though he has not been able to
participate in school. His favorite things are cuddles with his family, playing outdoors, playing with his puppy Layla, exploring the house, pulling cords or anything down and he also his ‘Toy Story’ movies and his new bedroom.
The annual fundraiser that Kayden’s family and friends host to help pay for his many needs cannot be held this year due to Covid-19. In the past, the funds helped pay from additional therapies, specialized formulas for his diet and costs
for private appointments and devices.
Kayden is now 9 years old. He is able to weight bear and stand with help. He wears AFOs (braces) and specialized shoes. He is learning to use his specialized walker. As mentioned he is growing and catching up in his weight and height. He
continues to babble with his oral communication. He makes noises to make his wishes known. He is still only currently tube-fed. He is fed a highly specialized diet, the majority of which consists of formula which is not available in Canada so needs to be shipped from the US.
In 2017, Kayden received funding from the Saskatoon Shrine Club to be assessed at their Children’s Hospital in Montreal. This hospital specializes in orthopedic, muscular and neuromuscular conditions. On the first visit he was
diagnosed with severe spinal scoliosis and fitted for a custom brace. Another trip was made to pick up and adjust the brace. Additional follow-up trips determined that surgery was necessary to correct the curvatures in his spine. After
being postponed due to Covid-19, this surgery finally took place in September of 2020. The entire Kot family travelled to Montreal to be together during this extremely stressful time. They spent one month in Montreal. The surgery &
recovery went well and Kayden now has steel rods in his spine and no longer needs the spinal brace. This will help him with gaining core and muscular strength.
In August 2020, the Kots were fortunate to sell their bi-level home and purchase a bungalow. This allows the family to have a more accessible home for Kayden, and to make it easier for them to care for him.
At this time in addition to supporting Kayden's ever changing and increasing dietary needs as he gets older among additional supplements and supports for Kayden, the Kots are planning on renovations in their new home. This includes a ramp and lift in the garage for Kayden's access to outside and for mobility for his appointments, as well as a fully accessible bathroom, and a renovation to his bedroom to widen the door, as well as physio room.
There will be Facebook page group with more details to come around Kayden's fundraiser - Kisses For Kayden 2021. This will all be virtual with an auction of a large variety of items.
The Kots are extremely grateful for everyone- near and far- who have contributed and look forward to hearing more from all you as this pandemic passes us and we can all be together again! There are no words that will ever be enough for the continued difference you have made in Kayden's and our life.