Kaden Micah's Support Fund
Donation protected
You never know how strong you are, until being strong is the only choice you have. And even then, being strong may not be enough. Sometimes you need friends and family to step in and be strong behind you.
That is what we are doing today. My name is Stephanie and together with friends and family we are starting a fund to provide much needed support for a little boy named Kaden Micah and his mother Natalie.
Kaden Micah is a happy, cheerful, loving boy of ten. By his second birthday he was diagnosed with severe autism. Before long his life was punctuated by visits with physical therapists, speech therapists, occupational therapists, special eating programs, behavioral programs and medications. He worked just as hard as they did to overcome the setbacks caused from the autism. Though there were many, he was a always a happy boy. But by the time he was four he began having seizures, and was soon diagnosed as epileptic.
At just 5 years old his family learned that he carried a genetic disorder, one that singled him out amongst all other recorded cases. He was the only one in the entire genome database with that mutation. To be that rare was confounding but with a team in place the family was determined to make Kaden Micah's life as normal and as enjoyable as possible. His mother Natalie has worked tirelessly and loves him more than anything else.
Last Friday he took a turn like nothing before and was admitted into the childrens hospital. Suddenly and without warning, he couldn't hold himself up to walk more than a few feet or a few seconds at a time. He was having long episodes of seizures and losing consciousness. His vision began to fail and for periods he couldn't see at all.
After many hours of intense testing, the medical team determined that he was suffering from ataxia on top of everything else and that the genetic mutation he originally had was now changed. Ataxia wreaks havoc on the nervous system and the brain, affecting control over balance, coordination, speech, vision and swallowing. It is rare. You can read more about it here:
National Ataxia Foundation
In Kaden's case, he couldn't walk, at times he could not see at all and no one knew when he could lose consciousness again. He had little, if any, control over his bodily movements. He was weak, confused and scared. The doctors couldn't predict when it would hit again, they only knew that it would happen and over the next two days it continued.
He finally stabilized and seemed to be coming back to his cheerful self but he still barely had the strength to sit up on his own. It's hard to explain to him what is happening so that he can understand it and not be afraid. With Kaden, the amazing thing is that he never complains. His heart is such that he just does what he can and loves his momma and their therapy dogs. He is very smart but has challenges communicating both how and what he is feeling with symptoms.
His doctors advised that he will need to have a wheelchair and harness on hand, permanently from this point going forward, as they can't predict when the ataxia will strike and he will lose his eyesight or consciousness. It is a harrowing game of waiting while trying to understand what is happening inside him.
Genetically he is suffering from a chromosomal disorder called 2Ch.24q.1, among some various other chromosomal abnormalities. At this time there is no cure. We are presently searching for a research geneticist that specializes in unknown significance to evaluate his particular case and ways to help him.
As we move forward he will now require a wheelchair, a 5 point harness booster seat, and numerous pieces of equipment. The wheelchair will be for when these episodes happen, for the recovery period afterward, and to also be used after energy depletion from seizures, etc. He will need this equipment as he will easily weaken and is no longer able to ambulate for normal periods on his own. He will need a home nurse to supplement the care that his mother Natalie is providing. Ataxia alone is rare and can eventually affect his ability to swallow, and breathe. Essentially, he will need care around the clock and we have moved to a period of 24/7 monitoring for his safety.
He will continue to undergo testing to determine what other genes are being affected by this mutation, and where it is spreading. We hope that somewhere there is relief in treatments for him so that he can recover.
Genetic testing takes time and the road for this is long. They are doing all they can but are overwhelmed by the mountain of costs in equipment and medical bills. His mother herself is still recovering from an emergency surgery last month for a hernia and trauma to her small intestines. She is a fighter through and through but needs help. Together we can get the equipment they need for the immediate plan and start the process of treating this thing. We will continue to provide updates as we learn more and how he is holding up.
I can't tell you how grateful both they, and I will be for any amount you can donate for this cause. Things are hard with so many unknowns but we are all praying for them and still hopeful that he will recover enough to be able to run and play again, even if it's for only a few minutes at a time.
Thank you, from the bottom of our hearts for your support and your love during this time. We appreciate you more than you know.
That is what we are doing today. My name is Stephanie and together with friends and family we are starting a fund to provide much needed support for a little boy named Kaden Micah and his mother Natalie.
Kaden Micah is a happy, cheerful, loving boy of ten. By his second birthday he was diagnosed with severe autism. Before long his life was punctuated by visits with physical therapists, speech therapists, occupational therapists, special eating programs, behavioral programs and medications. He worked just as hard as they did to overcome the setbacks caused from the autism. Though there were many, he was a always a happy boy. But by the time he was four he began having seizures, and was soon diagnosed as epileptic.
At just 5 years old his family learned that he carried a genetic disorder, one that singled him out amongst all other recorded cases. He was the only one in the entire genome database with that mutation. To be that rare was confounding but with a team in place the family was determined to make Kaden Micah's life as normal and as enjoyable as possible. His mother Natalie has worked tirelessly and loves him more than anything else.
Last Friday he took a turn like nothing before and was admitted into the childrens hospital. Suddenly and without warning, he couldn't hold himself up to walk more than a few feet or a few seconds at a time. He was having long episodes of seizures and losing consciousness. His vision began to fail and for periods he couldn't see at all.
After many hours of intense testing, the medical team determined that he was suffering from ataxia on top of everything else and that the genetic mutation he originally had was now changed. Ataxia wreaks havoc on the nervous system and the brain, affecting control over balance, coordination, speech, vision and swallowing. It is rare. You can read more about it here:
National Ataxia Foundation
In Kaden's case, he couldn't walk, at times he could not see at all and no one knew when he could lose consciousness again. He had little, if any, control over his bodily movements. He was weak, confused and scared. The doctors couldn't predict when it would hit again, they only knew that it would happen and over the next two days it continued.
He finally stabilized and seemed to be coming back to his cheerful self but he still barely had the strength to sit up on his own. It's hard to explain to him what is happening so that he can understand it and not be afraid. With Kaden, the amazing thing is that he never complains. His heart is such that he just does what he can and loves his momma and their therapy dogs. He is very smart but has challenges communicating both how and what he is feeling with symptoms.
His doctors advised that he will need to have a wheelchair and harness on hand, permanently from this point going forward, as they can't predict when the ataxia will strike and he will lose his eyesight or consciousness. It is a harrowing game of waiting while trying to understand what is happening inside him.
Genetically he is suffering from a chromosomal disorder called 2Ch.24q.1, among some various other chromosomal abnormalities. At this time there is no cure. We are presently searching for a research geneticist that specializes in unknown significance to evaluate his particular case and ways to help him.
As we move forward he will now require a wheelchair, a 5 point harness booster seat, and numerous pieces of equipment. The wheelchair will be for when these episodes happen, for the recovery period afterward, and to also be used after energy depletion from seizures, etc. He will need this equipment as he will easily weaken and is no longer able to ambulate for normal periods on his own. He will need a home nurse to supplement the care that his mother Natalie is providing. Ataxia alone is rare and can eventually affect his ability to swallow, and breathe. Essentially, he will need care around the clock and we have moved to a period of 24/7 monitoring for his safety.
He will continue to undergo testing to determine what other genes are being affected by this mutation, and where it is spreading. We hope that somewhere there is relief in treatments for him so that he can recover.
Genetic testing takes time and the road for this is long. They are doing all they can but are overwhelmed by the mountain of costs in equipment and medical bills. His mother herself is still recovering from an emergency surgery last month for a hernia and trauma to her small intestines. She is a fighter through and through but needs help. Together we can get the equipment they need for the immediate plan and start the process of treating this thing. We will continue to provide updates as we learn more and how he is holding up.
I can't tell you how grateful both they, and I will be for any amount you can donate for this cause. Things are hard with so many unknowns but we are all praying for them and still hopeful that he will recover enough to be able to run and play again, even if it's for only a few minutes at a time.
Thank you, from the bottom of our hearts for your support and your love during this time. We appreciate you more than you know.
Organizer and beneficiary
Stephanie Goodman Johnson
Organizer
Austin, TX
Natalie Cramer-Patton
Beneficiary
