Cody & Kayla On The Road To A Cure
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UPDATE ON DECEMBER 10, 2017
Today I felt the same pain and hopelessness as I felt in early 2011.
Cody and Kayla were diagnosed in 2011 with a life threatening disease.
Today my partner for 24 years suffered a stroke. I thought the news about our children would be the worse thing I could imagine. I was wrong. Watching your husband helplessly lay in a hospital bed with tubes everywhere. Having no feeling on his left side, and being told the next 72 hours are critical. And either way, his recovery will take months. Now the man that keeps me strong is in a medical induced coma.
The one that keeps me going on days that are rough. Now his days are rough and will continue to be rough for most of next year.
Our brave Cody and Kayla are cooperating with an altered schedule. They are staying strong while both their dad and mom are unable to be home to care for them.
I am so thankful for all the people who have offered to assist with them so I can stay by my man's side.
CODY AND KAYLA'S STORY
Cody (21) and Kayla (17) were born with a rare genetic disease called Niemann Pick Type C (NPC). NPC is a progressive, neurodegenerative disease where the cells of the body accumulate lipids. The accumulation of lipids slowly causes damage to the brain cells, liver, spleen, and other tissues. As the disease progresses, it takes away the ability to walk, talk, swallow, and even recognize loved ones. It causes seizures, dementia, ataxia, cataplexy, and ultimately death. NPC has been called “Childhood Alzheimer”.
Cody and Kayla were both born with enlarged spleens. They were diagnosed with NPC in 2011 during their early adolescent years. At the age of 3, Cody had a bone marrow biopsy which revealed he had some sort of genetic disease which was unidentifiable at the time. By the end of 2009 there were clear indications that his speech was slower and had become a bit slurred. He also walked differently, his balance was off, he was experiencing hand tremors, and he was having learning difficulties in school. We took him to several doctors and every test and scan he had came out normal. He was referred to a Pediatric Genetic Neurologist at Vanderbilt University Hospital in Nashville, TN for further testing. In December 2010, the Doctor performed a specific blood test on Cody. Six weeks later (January 28, 2011) we were informed that he had Neiman-Pick Type C. Kayla was then tested and was positive as well. The prognosis for NPC is poor.
Currently, Cody and Kayla are enrolled in a Clinical Trial for a test drug. The drug, cyclodextrin, is administered to Cody and Kayla once a month through a lumbar puncture (spinal tap). They have been participating in this trial since January 2014. Cyclodextrin has shown to slow down the progression of NPC, but it is not a cure. The progression continues but at a slower rate.
There are many expenses associated with having two children diagnosed with a non curable disease. These expenses include, but are not limited to, medical bills, travel expenses to appointments, medications and special equipment.
Thank you for reading our story and please watch our video below.
www.codyandkaylaontheroadtoacure.net
https://youtu.be/5fErqjYIZnc
Today I felt the same pain and hopelessness as I felt in early 2011.
Cody and Kayla were diagnosed in 2011 with a life threatening disease.
Today my partner for 24 years suffered a stroke. I thought the news about our children would be the worse thing I could imagine. I was wrong. Watching your husband helplessly lay in a hospital bed with tubes everywhere. Having no feeling on his left side, and being told the next 72 hours are critical. And either way, his recovery will take months. Now the man that keeps me strong is in a medical induced coma.
The one that keeps me going on days that are rough. Now his days are rough and will continue to be rough for most of next year.
Our brave Cody and Kayla are cooperating with an altered schedule. They are staying strong while both their dad and mom are unable to be home to care for them.
I am so thankful for all the people who have offered to assist with them so I can stay by my man's side.
CODY AND KAYLA'S STORY
Cody (21) and Kayla (17) were born with a rare genetic disease called Niemann Pick Type C (NPC). NPC is a progressive, neurodegenerative disease where the cells of the body accumulate lipids. The accumulation of lipids slowly causes damage to the brain cells, liver, spleen, and other tissues. As the disease progresses, it takes away the ability to walk, talk, swallow, and even recognize loved ones. It causes seizures, dementia, ataxia, cataplexy, and ultimately death. NPC has been called “Childhood Alzheimer”.
Cody and Kayla were both born with enlarged spleens. They were diagnosed with NPC in 2011 during their early adolescent years. At the age of 3, Cody had a bone marrow biopsy which revealed he had some sort of genetic disease which was unidentifiable at the time. By the end of 2009 there were clear indications that his speech was slower and had become a bit slurred. He also walked differently, his balance was off, he was experiencing hand tremors, and he was having learning difficulties in school. We took him to several doctors and every test and scan he had came out normal. He was referred to a Pediatric Genetic Neurologist at Vanderbilt University Hospital in Nashville, TN for further testing. In December 2010, the Doctor performed a specific blood test on Cody. Six weeks later (January 28, 2011) we were informed that he had Neiman-Pick Type C. Kayla was then tested and was positive as well. The prognosis for NPC is poor.
Currently, Cody and Kayla are enrolled in a Clinical Trial for a test drug. The drug, cyclodextrin, is administered to Cody and Kayla once a month through a lumbar puncture (spinal tap). They have been participating in this trial since January 2014. Cyclodextrin has shown to slow down the progression of NPC, but it is not a cure. The progression continues but at a slower rate.
There are many expenses associated with having two children diagnosed with a non curable disease. These expenses include, but are not limited to, medical bills, travel expenses to appointments, medications and special equipment.
Thank you for reading our story and please watch our video below.
www.codyandkaylaontheroadtoacure.net
https://youtu.be/5fErqjYIZnc
Organizador
Dena Scott Ruthven
Organizador
Lexington, TX