BEE a Hero for NKH
Bee a Hero for NKH
This is our first "walk" to raise awareness and research for NKH (Non-ketotic Hyperglycinemia). Our goal is to walk 57.5 miles, which is 18 hours and 51 minutes, beginning at Cameron's resting place, Pierce Bros -Crestlawn Mortuary in Riverside, to my place of peace, Redondo Beach. If you would like to join us on Saturday, June 27, at 8:00 a.m. to walk for our cause, please contact us for more information at the links posted on this page. There are many options - you can walk with us the entire distance over two days, you can meet us at specific check points to walk or cheer us on, and/or you can meet us at Redondo Beach Pier to celebrate with us at the finish line. Our goal is to complete the walk by Sunday, June 28, at 5pm.
To learn more about Cameron's journey and NKH I share with you our story...
I would like to introduce you to my daughter Cameron. She was born with a rare genetic disorder called Non-Ketotic Hyperglycinemia also known as NKH and Glycine encephalopathy. Non-ketotic Hyperglycinemia, is a rare genetic disorder that affects 1 child in every 60,000 born and there is an estimated 500 children living with NKH worldwide. Children with this condition have a problem breaking down the amino acid glycine. This is caused by a defect in the genetic code for the machinery that is responsible for the glycine breakdown (called glycine cleavage enzyme). The mortality rate for children born with this condition is extremely high and many die as newborns. Those that do survive are often extremely disabled both mentally and physically with uncontrollable seizures. Many hospitals, doctors offices and our communities are unaware of this metabolic disorder and I hope to raise awareness by sharing our journey.
Cameron's life was nothing short of a miracle. She spent 35 days in the hospital after birth. During this time, we learned that Cameron's brain was bleeding, high protein levels were poising her body causing severe brain damage, she was having multiple seizures (silent seizures) that we could not visually see, and together we as a family would have to learn how to care for her. In the beginning doctor's informed us that our newborn might not survive and if she did she would be profoundly mentally disabled, very ill and might not make it to her first birthday. They also told us that our lives as new parents would be "Hell" so they would understand if we chose not to take on the responsibility of raising a child with severe physical and mental disabilities.
Taking care of Cameron was a full time job and required a team of people, not just her mommy and daddy. Our home was turned into a clinic. It was a place where nurses, therapists, doctors, and agencies visited often. Our door was always open as these were the people who helped keep our baby alive and provided myself and my husband with some relief. Cameron was very ill. She was given fourteen medications daily to control seizures, relax muscle spasms, help her digestive system, and control elevated protein levels. Therapists came into the home to work with Cameron to help her regain control of her body. They would also stretch her because her muscles were tight as a result of the seizures. Cameron was fed through a tube that was surgically placed in her stomach at two months old. Her feedings required a lot of patience as she had reflux and would often vomit afterwards. Doctor appointments consumed our schedule, as she was seen regularly by a Pediatric Specialist, Neurologist, Metabolic Team, G.I. Specialist, Orthopedic Specialist, Vision Specialist, Physical Therapist, Occupation Therapist, and a team of Early Intervention Therapists.
I watched Cameron grow into this little person despite the many challenges along the way. Though she had multiple disabilities, we treated her just as she was our daughter. We began to embrace NKH and created our own milestones: the day she smiled, the day she reached for something, the day she held my hand, the day she stood up while holding onto my legs. It was moments like these that gave mommy and daddy a little hope. March 18, 2004 was a day that I will never forget. My daughter lost her life to this incurable disease. She fought for three years and we as a family loved her, enjoyed her, and created memories that I will always cherish.
It has been eleven years since I held Cameron in my arms. I continue to support and walk side by side with NKH families: those who have lost their children, those who are caring for their children who are still living with this incurable disease, and most importantly new parents who have just received this devastating news. It is my mission to raise awareness for Non-ketotic Hyperglycinemia until all of communities understand this rare illness and how it impacts families, until every hospital, doctor, nurse, and medical student are familiar with NKH and have more information than one chapter (written by Johan Van Hove, MD, Phd), more research and prenatal testing, and until the day I meet my daughter again in Heaven.
This experience has been life changing and Cameron has given me strength, character, and a love for people with disabilities. My journey has included raising my daughter, receiving a credential and Masters in Special Education, teaching students with severe disabilities, and starting a foundation to raise funding for NKH research and support children with disabilities.
Thank you in advance for taking the time to read our story, share our story, like our story, raise awareness for NKH, support funding the research needed to learn more about this disease and eventually help to find a cure. To my precious Angel...thank you Cameron for picking me to be your voice and to be your mommy.
BEE a Hero for NKH
Johan L. Van Hove, MD, Phd
Cameron Paige Foundation
Cameron Paige Foundation Group
This is our first "walk" to raise awareness and research for NKH (Non-ketotic Hyperglycinemia). Our goal is to walk 57.5 miles, which is 18 hours and 51 minutes, beginning at Cameron's resting place, Pierce Bros -Crestlawn Mortuary in Riverside, to my place of peace, Redondo Beach. If you would like to join us on Saturday, June 27, at 8:00 a.m. to walk for our cause, please contact us for more information at the links posted on this page. There are many options - you can walk with us the entire distance over two days, you can meet us at specific check points to walk or cheer us on, and/or you can meet us at Redondo Beach Pier to celebrate with us at the finish line. Our goal is to complete the walk by Sunday, June 28, at 5pm.
To learn more about Cameron's journey and NKH I share with you our story...
I would like to introduce you to my daughter Cameron. She was born with a rare genetic disorder called Non-Ketotic Hyperglycinemia also known as NKH and Glycine encephalopathy. Non-ketotic Hyperglycinemia, is a rare genetic disorder that affects 1 child in every 60,000 born and there is an estimated 500 children living with NKH worldwide. Children with this condition have a problem breaking down the amino acid glycine. This is caused by a defect in the genetic code for the machinery that is responsible for the glycine breakdown (called glycine cleavage enzyme). The mortality rate for children born with this condition is extremely high and many die as newborns. Those that do survive are often extremely disabled both mentally and physically with uncontrollable seizures. Many hospitals, doctors offices and our communities are unaware of this metabolic disorder and I hope to raise awareness by sharing our journey.
Cameron's life was nothing short of a miracle. She spent 35 days in the hospital after birth. During this time, we learned that Cameron's brain was bleeding, high protein levels were poising her body causing severe brain damage, she was having multiple seizures (silent seizures) that we could not visually see, and together we as a family would have to learn how to care for her. In the beginning doctor's informed us that our newborn might not survive and if she did she would be profoundly mentally disabled, very ill and might not make it to her first birthday. They also told us that our lives as new parents would be "Hell" so they would understand if we chose not to take on the responsibility of raising a child with severe physical and mental disabilities.
Taking care of Cameron was a full time job and required a team of people, not just her mommy and daddy. Our home was turned into a clinic. It was a place where nurses, therapists, doctors, and agencies visited often. Our door was always open as these were the people who helped keep our baby alive and provided myself and my husband with some relief. Cameron was very ill. She was given fourteen medications daily to control seizures, relax muscle spasms, help her digestive system, and control elevated protein levels. Therapists came into the home to work with Cameron to help her regain control of her body. They would also stretch her because her muscles were tight as a result of the seizures. Cameron was fed through a tube that was surgically placed in her stomach at two months old. Her feedings required a lot of patience as she had reflux and would often vomit afterwards. Doctor appointments consumed our schedule, as she was seen regularly by a Pediatric Specialist, Neurologist, Metabolic Team, G.I. Specialist, Orthopedic Specialist, Vision Specialist, Physical Therapist, Occupation Therapist, and a team of Early Intervention Therapists.
I watched Cameron grow into this little person despite the many challenges along the way. Though she had multiple disabilities, we treated her just as she was our daughter. We began to embrace NKH and created our own milestones: the day she smiled, the day she reached for something, the day she held my hand, the day she stood up while holding onto my legs. It was moments like these that gave mommy and daddy a little hope. March 18, 2004 was a day that I will never forget. My daughter lost her life to this incurable disease. She fought for three years and we as a family loved her, enjoyed her, and created memories that I will always cherish.
It has been eleven years since I held Cameron in my arms. I continue to support and walk side by side with NKH families: those who have lost their children, those who are caring for their children who are still living with this incurable disease, and most importantly new parents who have just received this devastating news. It is my mission to raise awareness for Non-ketotic Hyperglycinemia until all of communities understand this rare illness and how it impacts families, until every hospital, doctor, nurse, and medical student are familiar with NKH and have more information than one chapter (written by Johan Van Hove, MD, Phd), more research and prenatal testing, and until the day I meet my daughter again in Heaven.
This experience has been life changing and Cameron has given me strength, character, and a love for people with disabilities. My journey has included raising my daughter, receiving a credential and Masters in Special Education, teaching students with severe disabilities, and starting a foundation to raise funding for NKH research and support children with disabilities.
Thank you in advance for taking the time to read our story, share our story, like our story, raise awareness for NKH, support funding the research needed to learn more about this disease and eventually help to find a cure. To my precious Angel...thank you Cameron for picking me to be your voice and to be your mommy.
BEE a Hero for NKH
Johan L. Van Hove, MD, Phd
Cameron Paige Foundation
Cameron Paige Foundation Group
Organizer
Colleen Aguirre
Organizer
Corona, CA
Anonymous
Beneficiary