Kenzie's Nevus Journey
Don protégé
I am hoping to help raise money for my wonderful friends and their family to help cover medical costs for their daughter.
Kenzie Jo and Kaydance James came into the world on September 4, 2009 at Mount Sinai Hospital in Toronto, Ontario. Their mother Kristin was airlifted from their home in Alberta, Canada for what would have been a routine surgery during pregnancy, however she went into labour on the plane. Born 14 weeks early Kenzie and Kaydance were beautiful additions to their family; Kristin, Jason and Jayda (and now baby Havyk) live in Sylvan Lake, Ab. With the addition of the twins their family was overjoyed! But following their birth, Jason and Kristin were advised that the twins would not likely survive, and if they had they would live a very short life in a vegetative state. Against all medical odds, Kenzie and Kaydance have grown to be beautiful, spunky, loving and incredibly resilient 6 year old girls, who just started grade one!
Shortly after birth, Kenzie was diagnosed with Congenital Melanocytic Nevus, and at age two both of the girls were diagnosed with Cerebral Palsy.
Here is a brief description of the Girls conditions:
Cerebral Palsy:
Cerebral Pasly is a condition that affects coordination, muscle tone, movement and motor skills. CP is caused by trauma to the brain that occurs either during pregnancy or birth. Premature babies have a much higher chance of having CP than full term babies. Kenzie and Kaydance both have what is called spastic cerebral palsy. Spastic CP causes tightness and stiffness in the muscles and difficulty in movement. Kaydance is affected on the right side of her body, while Kenzie is affected through much of her body. Since the muscles are affected in CP, the simplest of tasks can be quite difficult. Kaydance has a difficult time running and keeping up with other children, while Kenzie is unable to walk unassisted and requires the use of either a wheelchair or a walker. Kenzie also has a difficult time with balance when sitting up, and writing and eating is more difficult for her than other children. Simple tasks that require the use of hands can be challenging to both girls. There is no cure for Cerebral Palsy. Kenzie and Kaydance have both had surgery on their legs to help loosen the muscles and tendons in order to make leg movement easier for them. Kenzie has attended physio therapy 2-3 times a week since she was 3 and continues to become stronger and stronger.
Congenital Melanocytic Nevus:
CMN is a pigment based mole like spot that is present at birth. About 1/20 000 children are born with CMN, no two Nevi are the same. All Nevi range in size and in placement, Kenzie has a giant trunk nevus, which covers approximately 25% of her body; her entire back and sides. Approximately 1/500 000 children are born with a Giant Nevi. Giant Nevi’s also have smaller mole like spots that accompany them scattered throughout the body, these are called Satellites. Kenzie has approximately 100 satellites on her body and new ones form all of the time. About 75% of Kenzie’s satellites will grow hair and her Nevus itself also grows hair. CMN increases her risk of Malignant Melanoma, so it is important to constantly check her satellites and her Nevi for any discolouration. Kenzie was also born with a tumor directly under her Nevi. Her tumor was surgically removed when she was 8 months old. To date Kenzie has had 7 surgeries to scrape, cut and remove pieces if her Nevi, but is still left with her entire back covered. Kenzie has also had 8 surgeries to removed potentially cancerous moles. Kenzie must also have an MRI yearly in order to monitor to possibility of nevus cell developments in her brain.
Through the course of their lives the twins have both had several hospital stays and surgeries to help with their mobility and Kenzie’s CMN. Kristin drives with the girls twice a month from Sylvan Lake, AB to Calgary, Ab to see specialists in the Children’s Hospital as that is where their primary care is. Kenzie and Kaydance both have to wear AFO (leg braces) which need to be replaced yearly as they grow and Kenzie uses a wheelchair, and a walker for transportation. Kenzie is also being fitted for a power chair. The medical costs, travel and equipment for the twins is not all covered under their provincial health care.
Jason and Kristin have recently found a doctor that will remove Kenzie’s Nevus! Removal will not only help with the physical, mental and emotional aspects of having giant nevus, but it will also decrease her chances of cancer. Kenzie will undergo 3 rounds of tissue expansion with Dr. Bruce Bauer at NorthShore Medical Clinic, in Chicago, Illinois. With each round Kenzie will receive 2 surgeries. The first surgery will be to insert the tissue expanders, and the second surgery to remove expanders as well as replace the Nevi with her new skin. Each round requires 3 return flights from Calgary, Ab to Chicago, Il.
Kenzie’s expansion surgery creates significant expenses for the McDouall family which include, but are not limited to: all medical costs, flights, lodging, out of town meals, transportation in Chicago and care for their other 3 children while they are in Chicago. Our goal is to help Jay and Kristin by offsetting some of the costs associated with Kenzie’s surgeries. Currently, Jason is not able to leave work to attend surgeries with Kristin and Kenzie in Chicago due to the financial investment associated with the procedure.
Let me tell you about the McDoualls
Jason and Kristin are two of the strongest, most compassionate and generous people that I know. I have known Jason for about 15 years and I met Kristin 10 years ago when her and Jason met. Despite the many emotional trials these two have faced and the challenges they have overcome, I have not once heard either of them complain about their situation or the struggles their children have had. They continue to be optimistic and the beacon of strength for their four girls.
Jason and Kristin are always the first to lend a hand to friends or family and are always there when others are in need. Never, do they ask for anything in return. Kristin is a devoted mother and her days are filled with everything to do with their four daughters; and more commonly than not, one of their many nieces and nephews are spending the day with her as well. Their home is the home that all of the children on the block want to play at; she is a second mother to so many in their neighbourhood. Each waking moment of her day is entirely for her girls, whether it be soccer games, cheer camps, horse riding, doctors visits, Kristin is the definition of wonder woman, but in real life! Jason is an incredible father and loving husband. He is self employed, which takes him away from home often for work. But never have I heard him complain, his is truly grateful to be able to provide for his family. Whether he is at home or away working his family is always the most important on his list. He never forgets to call the girls and every moment he is home is spent with his daughters & wife. Jason spends many nights away at work researching his daughter's conditions and learning every possible thing their family can do in order to help the girls along the way. There is not a day that goes by that these girls hearts are not full of love. Jason has worked his entire life to provide a home for his family and all of the necessities for the girls. Jayda, their oldest is exactly what you could picture for the perfect big sister. Jayda is patient and sensitive, but also bold and protective of her sisters. Their newest addition Havyk is a daring but beautiful young girl who I have no doubts will grow to be as special as her 3 older sisters.
Despite having two disabled children and many medical issues Jason & Kristin continue to be active in community functions, sports activities and are always searching for new things for their girls to participate in! Jason and Kristin would never complain about their situation or ask for help, they both value hard work and are two of the most appreciative and humble people that I have met. It is not surprising that they have raised four truly extraordinary young girls.
My hope is that after learning about this remarkable family, people will donate to help assist them on their journey to freeing Kenzie of CMN. No amount is too small and Kenzie will be forever grateful to those of you who have helped her and her family along their journey. Every thought, message and donation is greatly apprciated. Thank you in advance.
Kenzie Jo and Kaydance James came into the world on September 4, 2009 at Mount Sinai Hospital in Toronto, Ontario. Their mother Kristin was airlifted from their home in Alberta, Canada for what would have been a routine surgery during pregnancy, however she went into labour on the plane. Born 14 weeks early Kenzie and Kaydance were beautiful additions to their family; Kristin, Jason and Jayda (and now baby Havyk) live in Sylvan Lake, Ab. With the addition of the twins their family was overjoyed! But following their birth, Jason and Kristin were advised that the twins would not likely survive, and if they had they would live a very short life in a vegetative state. Against all medical odds, Kenzie and Kaydance have grown to be beautiful, spunky, loving and incredibly resilient 6 year old girls, who just started grade one!
Shortly after birth, Kenzie was diagnosed with Congenital Melanocytic Nevus, and at age two both of the girls were diagnosed with Cerebral Palsy.
Here is a brief description of the Girls conditions:
Cerebral Palsy:
Cerebral Pasly is a condition that affects coordination, muscle tone, movement and motor skills. CP is caused by trauma to the brain that occurs either during pregnancy or birth. Premature babies have a much higher chance of having CP than full term babies. Kenzie and Kaydance both have what is called spastic cerebral palsy. Spastic CP causes tightness and stiffness in the muscles and difficulty in movement. Kaydance is affected on the right side of her body, while Kenzie is affected through much of her body. Since the muscles are affected in CP, the simplest of tasks can be quite difficult. Kaydance has a difficult time running and keeping up with other children, while Kenzie is unable to walk unassisted and requires the use of either a wheelchair or a walker. Kenzie also has a difficult time with balance when sitting up, and writing and eating is more difficult for her than other children. Simple tasks that require the use of hands can be challenging to both girls. There is no cure for Cerebral Palsy. Kenzie and Kaydance have both had surgery on their legs to help loosen the muscles and tendons in order to make leg movement easier for them. Kenzie has attended physio therapy 2-3 times a week since she was 3 and continues to become stronger and stronger.
Congenital Melanocytic Nevus:
CMN is a pigment based mole like spot that is present at birth. About 1/20 000 children are born with CMN, no two Nevi are the same. All Nevi range in size and in placement, Kenzie has a giant trunk nevus, which covers approximately 25% of her body; her entire back and sides. Approximately 1/500 000 children are born with a Giant Nevi. Giant Nevi’s also have smaller mole like spots that accompany them scattered throughout the body, these are called Satellites. Kenzie has approximately 100 satellites on her body and new ones form all of the time. About 75% of Kenzie’s satellites will grow hair and her Nevus itself also grows hair. CMN increases her risk of Malignant Melanoma, so it is important to constantly check her satellites and her Nevi for any discolouration. Kenzie was also born with a tumor directly under her Nevi. Her tumor was surgically removed when she was 8 months old. To date Kenzie has had 7 surgeries to scrape, cut and remove pieces if her Nevi, but is still left with her entire back covered. Kenzie has also had 8 surgeries to removed potentially cancerous moles. Kenzie must also have an MRI yearly in order to monitor to possibility of nevus cell developments in her brain.
Through the course of their lives the twins have both had several hospital stays and surgeries to help with their mobility and Kenzie’s CMN. Kristin drives with the girls twice a month from Sylvan Lake, AB to Calgary, Ab to see specialists in the Children’s Hospital as that is where their primary care is. Kenzie and Kaydance both have to wear AFO (leg braces) which need to be replaced yearly as they grow and Kenzie uses a wheelchair, and a walker for transportation. Kenzie is also being fitted for a power chair. The medical costs, travel and equipment for the twins is not all covered under their provincial health care.
Jason and Kristin have recently found a doctor that will remove Kenzie’s Nevus! Removal will not only help with the physical, mental and emotional aspects of having giant nevus, but it will also decrease her chances of cancer. Kenzie will undergo 3 rounds of tissue expansion with Dr. Bruce Bauer at NorthShore Medical Clinic, in Chicago, Illinois. With each round Kenzie will receive 2 surgeries. The first surgery will be to insert the tissue expanders, and the second surgery to remove expanders as well as replace the Nevi with her new skin. Each round requires 3 return flights from Calgary, Ab to Chicago, Il.
Kenzie’s expansion surgery creates significant expenses for the McDouall family which include, but are not limited to: all medical costs, flights, lodging, out of town meals, transportation in Chicago and care for their other 3 children while they are in Chicago. Our goal is to help Jay and Kristin by offsetting some of the costs associated with Kenzie’s surgeries. Currently, Jason is not able to leave work to attend surgeries with Kristin and Kenzie in Chicago due to the financial investment associated with the procedure.
Let me tell you about the McDoualls
Jason and Kristin are two of the strongest, most compassionate and generous people that I know. I have known Jason for about 15 years and I met Kristin 10 years ago when her and Jason met. Despite the many emotional trials these two have faced and the challenges they have overcome, I have not once heard either of them complain about their situation or the struggles their children have had. They continue to be optimistic and the beacon of strength for their four girls.
Jason and Kristin are always the first to lend a hand to friends or family and are always there when others are in need. Never, do they ask for anything in return. Kristin is a devoted mother and her days are filled with everything to do with their four daughters; and more commonly than not, one of their many nieces and nephews are spending the day with her as well. Their home is the home that all of the children on the block want to play at; she is a second mother to so many in their neighbourhood. Each waking moment of her day is entirely for her girls, whether it be soccer games, cheer camps, horse riding, doctors visits, Kristin is the definition of wonder woman, but in real life! Jason is an incredible father and loving husband. He is self employed, which takes him away from home often for work. But never have I heard him complain, his is truly grateful to be able to provide for his family. Whether he is at home or away working his family is always the most important on his list. He never forgets to call the girls and every moment he is home is spent with his daughters & wife. Jason spends many nights away at work researching his daughter's conditions and learning every possible thing their family can do in order to help the girls along the way. There is not a day that goes by that these girls hearts are not full of love. Jason has worked his entire life to provide a home for his family and all of the necessities for the girls. Jayda, their oldest is exactly what you could picture for the perfect big sister. Jayda is patient and sensitive, but also bold and protective of her sisters. Their newest addition Havyk is a daring but beautiful young girl who I have no doubts will grow to be as special as her 3 older sisters.
Despite having two disabled children and many medical issues Jason & Kristin continue to be active in community functions, sports activities and are always searching for new things for their girls to participate in! Jason and Kristin would never complain about their situation or ask for help, they both value hard work and are two of the most appreciative and humble people that I have met. It is not surprising that they have raised four truly extraordinary young girls.
My hope is that after learning about this remarkable family, people will donate to help assist them on their journey to freeing Kenzie of CMN. No amount is too small and Kenzie will be forever grateful to those of you who have helped her and her family along their journey. Every thought, message and donation is greatly apprciated. Thank you in advance.
Organisateur
Chelsey Giesbrecht
Organisateur
Sylvan Lake, AB