Building Peyton's Place
Donation protected
Peyton's Story
At the age of 7, my normal, active son had his first seizure. At the age of 13 he began experiencing an increase in uncontrollable seizures, severe vision loss and trouble finding his words. Peyton's Neurologist ordered genetic testing in June of 2014. It takes several months to receive the results but no one could have prepared to have received the news I was given in February of 2015. The Neurologist and I both cried as he delivered the news and explained the best he could about this rare disease and the harsh reality of our future.
The disease is an inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. Peyton's seizures began at age 7 but was well controlled until he turned 13. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. He's 6'1, 250 lbs and has always been a "big" kid for his age. We always attributed his clumsiness to his size. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with with this disease become blind. Although, Peyton can still see, this past January he was diagnosed as legally blind. Peyton is now 17 and is doing well compared to others his age and younger that suffer from this disease. My fear is not of my child dying, it is him not being able to "live" while he is living.
Since he was 3 years old he's loved sports! Basketball, baseball and soccer! Over the past few years it's become increasingly difficult and unsafe for him to participate in competitive sports. Sunlight and flashes of light has become one of his seizure triggers. We have found some really dark prescription sunglasses to help with daily activities but he is limited to outdoor play in a grassy area the 30 minutes between when the sun goes down and it becomes dark. I have been working to save to build him a metal building with a high roof, padded floors and create a safe indoor place for him to play basketball, baseball, ping pong and other outdoor activities he enjoys.
Peyton is such a gentle, kind hearted kid. Despite all of his limitations he never complains and adapts to his limitations. Things he used to love to do but can't such as sports, swimming (he was a fish in the water), roller coasters, staying up late, spending the night with friends, certain video games, things the rest of us take for granted, he's learned to avoid and not complain or pity himself. I don't want him to learn to adapt to giving up being active just yet. I know there may be a day his body will not allow him to be active anymore but today is not that day!
It's very hard for me to ask for or accept help but I'm learning I can't do this alone. I need to get past my pride for the betterment of my child's quality of life. Lisa, thank you for being a Woman of God and being so compassion and generous with your love. I know God has a grand plan for us all and there is a reason for our struggles. While I wish my child or any child didn't have to suffer through this, God has blessed me with some amazing people such as yourself! No words can express my sincere gratitude. May God continue to bless you!
At the age of 7, my normal, active son had his first seizure. At the age of 13 he began experiencing an increase in uncontrollable seizures, severe vision loss and trouble finding his words. Peyton's Neurologist ordered genetic testing in June of 2014. It takes several months to receive the results but no one could have prepared to have received the news I was given in February of 2015. The Neurologist and I both cried as he delivered the news and explained the best he could about this rare disease and the harsh reality of our future.
The disease is an inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. Peyton's seizures began at age 7 but was well controlled until he turned 13. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. He's 6'1, 250 lbs and has always been a "big" kid for his age. We always attributed his clumsiness to his size. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with with this disease become blind. Although, Peyton can still see, this past January he was diagnosed as legally blind. Peyton is now 17 and is doing well compared to others his age and younger that suffer from this disease. My fear is not of my child dying, it is him not being able to "live" while he is living.
Since he was 3 years old he's loved sports! Basketball, baseball and soccer! Over the past few years it's become increasingly difficult and unsafe for him to participate in competitive sports. Sunlight and flashes of light has become one of his seizure triggers. We have found some really dark prescription sunglasses to help with daily activities but he is limited to outdoor play in a grassy area the 30 minutes between when the sun goes down and it becomes dark. I have been working to save to build him a metal building with a high roof, padded floors and create a safe indoor place for him to play basketball, baseball, ping pong and other outdoor activities he enjoys.
Peyton is such a gentle, kind hearted kid. Despite all of his limitations he never complains and adapts to his limitations. Things he used to love to do but can't such as sports, swimming (he was a fish in the water), roller coasters, staying up late, spending the night with friends, certain video games, things the rest of us take for granted, he's learned to avoid and not complain or pity himself. I don't want him to learn to adapt to giving up being active just yet. I know there may be a day his body will not allow him to be active anymore but today is not that day!
It's very hard for me to ask for or accept help but I'm learning I can't do this alone. I need to get past my pride for the betterment of my child's quality of life. Lisa, thank you for being a Woman of God and being so compassion and generous with your love. I know God has a grand plan for us all and there is a reason for our struggles. While I wish my child or any child didn't have to suffer through this, God has blessed me with some amazing people such as yourself! No words can express my sincere gratitude. May God continue to bless you!
Organizer and beneficiary
Lisa Burkes
Organizer
Waxahachie, TX
Melinda Perry
Beneficiary
