Kayson’s Handicapable House
Donation protected
My name is Kayson and I am a very happy 3 year old with Spina Bifida and Cerebral Palsy that loves to laugh, play, listen to music, clap, dance, and stomp. I enjoy fishing, swimming, playing at the park, going for walks, and banging on my drum set.
When my mother was 19 weeks along, she received the news that I had a condition called Spina Bifida. Due to her medical background as a Licensed Practical Nurse, she was confident that we would be able to handle the complications that came with my diagnosis. However, our lives changed dramatically on the day I was born. At birth, I was unresponsive with a broken clavicle due to becoming stuck. The doctors at Children’s Hospital Froedtert in Milwaukee, WI had to intubate, conduct surgery to close my spine, and start running the endless amount of tests.
The tests confirmed that I had “Myelomeningocele (backbone and spinal canal was not closed),” “Hydrocephalus (fluid buildup in the ventricles deep in the brain),” and “Chiari Malformation Type ll (brain tissue extends into my spinal canal).” However, due to the lack of oxygen and blood flow to my brain during birth, we were presented with several major complications that we were not prepared for: “Hypoxic-ischemic Brain Injury of Newborn (severe damage to the brain due to oxygen deprivation),” “Dysphagia (difficulty swallowing),” “Hypotonia (decreased muscle tone),” and “Cerebral Palsy (disorder that affects my ability to move and maintain balance and posture).”
After my long NICU stay, I was able to go home with my mom where she continues to advocate for me everyday. I am now enrolled with 14 specialists that we see often along with weekly rehabs PT/OT/Speech. I depend on a gait trainer (walker) and wheelchair to get around, but I’m still trying to get the hang of it. Not being able to walk on my own proves to be a challenge at times, especially because our home is not handicapable. My mother has to carry me up steps into the house and up the stairs to my bedroom and our only bathroom. My mom works full-time as a nurse and has been passionately trying to save up for a downpayment on a handicapable home! However, recently I have started having scary seizures that require her to call out of work and accompany me at the hospital. I have had a total of 38 seizures in a small amount of time and they have become more frequent. This is not only taxing on us emotionally but has proven to become difficult financially.
It is now at this point that we realize we need help from our community with buying a home that accommodates my need to be able to access everything on one level, that fits my wheelchair, and has ramps. With help from our community, our goal is to raise $32,000 to cover the downpayment and closing costs with the bank for a handicapable house. Please visit our GoFundMe page to donate towards my new home! For more information and to continue to follow our story, visit our Instagram hashtag: #KaysonJohn17 or Facebook page: https://www.facebook.com/KaysonJohn17/
When my mother was 19 weeks along, she received the news that I had a condition called Spina Bifida. Due to her medical background as a Licensed Practical Nurse, she was confident that we would be able to handle the complications that came with my diagnosis. However, our lives changed dramatically on the day I was born. At birth, I was unresponsive with a broken clavicle due to becoming stuck. The doctors at Children’s Hospital Froedtert in Milwaukee, WI had to intubate, conduct surgery to close my spine, and start running the endless amount of tests.
The tests confirmed that I had “Myelomeningocele (backbone and spinal canal was not closed),” “Hydrocephalus (fluid buildup in the ventricles deep in the brain),” and “Chiari Malformation Type ll (brain tissue extends into my spinal canal).” However, due to the lack of oxygen and blood flow to my brain during birth, we were presented with several major complications that we were not prepared for: “Hypoxic-ischemic Brain Injury of Newborn (severe damage to the brain due to oxygen deprivation),” “Dysphagia (difficulty swallowing),” “Hypotonia (decreased muscle tone),” and “Cerebral Palsy (disorder that affects my ability to move and maintain balance and posture).”
After my long NICU stay, I was able to go home with my mom where she continues to advocate for me everyday. I am now enrolled with 14 specialists that we see often along with weekly rehabs PT/OT/Speech. I depend on a gait trainer (walker) and wheelchair to get around, but I’m still trying to get the hang of it. Not being able to walk on my own proves to be a challenge at times, especially because our home is not handicapable. My mother has to carry me up steps into the house and up the stairs to my bedroom and our only bathroom. My mom works full-time as a nurse and has been passionately trying to save up for a downpayment on a handicapable home! However, recently I have started having scary seizures that require her to call out of work and accompany me at the hospital. I have had a total of 38 seizures in a small amount of time and they have become more frequent. This is not only taxing on us emotionally but has proven to become difficult financially.
It is now at this point that we realize we need help from our community with buying a home that accommodates my need to be able to access everything on one level, that fits my wheelchair, and has ramps. With help from our community, our goal is to raise $32,000 to cover the downpayment and closing costs with the bank for a handicapable house. Please visit our GoFundMe page to donate towards my new home! For more information and to continue to follow our story, visit our Instagram hashtag: #KaysonJohn17 or Facebook page: https://www.facebook.com/KaysonJohn17/
Organizer
Kayson Graham
Organizer
Appleton, WI