Moving Mountains for Kai
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Moving Mountains for Kai
Kai, our beautiful baby boy, suffers from multiple neurological, and consequently, physical problems. We have recently learned that Kai's neurological issues cannot be corrected by modern medicine. Over the course of the last fifteen months he has bravely endured enormous medical challenges. This past year has been emotionally and financially devastating to our family. Because of his diagnoses, and highly variant prognosis, we are left filled with great uncertainty about Kai’s quality of life for the future and enormous present-day challenges in providing Kai with the services, and environment, that his disabilities require.
The Whole Story
Kai was born with severe tremors throughout his body. When he was only a few hours old, Kai was transported via ambulance to the NICU at Pittsburgh Children’s Hospital. They immediately began performing all kinds of testing on him (including MRI’s, EEG’s, blood testing and urinalysis, even a spinal tap). After several days of invasive testing, his clinical team determined that Kai had been born with an underdeveloped neurological system. There were no indications of other health issues. Although the days after Kai’s birth had been traumatic we were advised that no other health challenges were detected and that he was, and should remain, a healthy boy.
This proved to be true over his first few months of life until one day in the beginning of September (2017) Kai began having seizures. I cannot even begin to express how terrifying this was for us. We returned to Pittsburgh Children’s Hospital and Kai was immediately admitted. They were not able to treat his seizures until they figured out why he was having them so, for five agonizing days we watched baby Kai seize over and over again. Many tests and procedures later, Kai was diagnosed with Infantile Spasms (IS), a rare seizure disorder that only presents within the first year of life.
After meeting with his neurological care team, we decided to opt for a medication called H.P. Acthar Gel because, it had the highest success rate in clinical trials. This medication has the capability to stop spasms by resetting a baby’s brain waves through hormone therapy in order to interrupt the abnormal brain activity that is occurring.
Kai began receiving injections into a specific set of muscles in his thighs. The next challenge, which we were not anticipating, was that our major medical insurance would not cover Kai to stay in-patient at the hospital to receive this treatment or cover a post-acute rehab where the injections could be administered by a registered nurse. With no other option, we began learning how to administer these critical injections to Kai ourselves.
Over the course of the following month, we administered approximately fifty of these injections to our baby boy and watched with baited breath as his seizures became less and less frequent. Once Kai had completed his one-month course of treatment with this medication, he was admitted back into the Children’s Hospital in Pittsburgh for follow up testing and EEG monitoring.
We were beyond relieved to learn that the medication had worked, Kai’s brain was not showing any more of the irregular activity or sparks that are associated with seizures. We were told that there was risk of relapse and Kai would need to have another EEG done around the time of his first birthday but, we were so grateful for this hopeful prognosis.
As we watched Kai grow and develop over the following six months, we began noticing that his development was very different than that of our other children. He was not achieving developmental milestones in regard to: gross and fine motor activities, speech, eating, etc.
To our dismay, Kai’s neurologist not only validated our concerns she discovered other concerning factors in her physical evaluation of him (specifically that all of Kai’s muscles were becoming increasingly rigid and that he didn’t have the muscle tone he needed to be able to sit, crawl, stand, etc.). She told us that there were many neurological conditions that could be causing such symptoms and that Kai would need to be admitted to the hospital again for a sedated MRI, EEG, and genetic testing. She felt confident that there were other neurological issues in play that had not been discovered initially.
Three days after little Kai’s first birthday, he went in-patient at Golisano Children’s Hospital in Southwest Florida for the procedures and testing that had been recommended. The results of this testing left us feeling broken; filled with fear and sadness about the uncertainty of Kai’s future health and well-being. Although Kai’s EEG still showed no abnormal brain activity (which meant his risk for IS relapse was extremely low), the results of his MRI revealed that Kai’s brain had not developed properly.
MRI imaging showed that Kai’s ventricles (small fluid filled sacs on each side of the brain) were larger than they are supposed to be and were also asymmetric. Because of this size difference, Kai has less brain matter than he should. There is not anything that can be done to fix this condition. It is also impossible to know the implications this condition will have on Kai because it all depends on how Kai’s brain continues to develop over time, and if the ventricles remain the same, or God forbid, worsen.
What we do know is that Kai developed his infantile spasms from a genetic variance that was detected in this last series of testing. We also know that because his brain did not develop properly it is much harder for him to learn and develop. He has severe sensory integration issues and is presenting with many early signs and symptoms of autism. This recent development has had a debilitating impact on our ability to include Kai in family activities as simple as attending church or going shopping because, he goes into sensory overload and becomes inconsolably upset.
Kai’s current diagnoses include: history of infantile spasms, infant hypertonia, gross motor delay, opisthotonos (white matter disorder), genetic variance of KCNA2 and GABBR2, and autism spectrum disorder(s).
Current Challenges
Our present-day challenges are many. Over the past fifteen months, we have accrued an overwhelming amount of debt resulting from Kai’s care, and all the implications that it has had on our family. We will continue to have extensive out-of-pocket costs resulting from Kai’s future care. In addition, we are trying to relocate our family much closer to Kai’s neurological care team, and the children’s hospital where he has received his care, and where he needs to begin comprehensive out-patient therapies (physical, occupational, and speech).
For the past four months, he has been receiving his therapies in our home. Although we are grateful for these services, the out-patient therapies at the children’s hospital will be much more specialized and rigorous. Our family is currently living on one-income because Kai’s severe sensory integration issues, and other medical complexities, prevent him from being able to attend mainstream daycare programs.
We decided to initiate this Go Fund Me campaign because, we have relentlessly pursued all other possible avenues of financial support (including but not limited to: financial assistance programs with health care providers, state and federal disability programs, 401k loans and liquidation, the sale of our home, and the sale of personal property).
How you can Help
Above all, we believe in the power of prayer and positive thinking. If Kai’s story has been impactful to you, please include him in your prayers and share prayer requests with those in your religious or spiritual circles.
If you are able to contribute financially to our campaign, all donations are wholeheartedly appreciated (no donation size is too small). If you are not able to contribute to our campaign financially, please validate our campaign by sharing Kai’s story with your connections on social media outlets.
Our Inspiration
Our children, and all they depend on us for, are our inspiration. They are what keep us going each and every day. We are determined to continue “moving mountains” for Kai in order to provide him the best medical, therapeutic, cognitive, social, and emotional services possible; both in our home and through his clinical care team. By focusing on this goal, we will (at least) have the comfort of knowing that we did everything we possibly could to help him overcome, and learn to cope with, his disabilities.
If you have faith as small as a mustard seed you can say to this mountain “move" and it will move. (Matthew 17:20)
Kai, our beautiful baby boy, suffers from multiple neurological, and consequently, physical problems. We have recently learned that Kai's neurological issues cannot be corrected by modern medicine. Over the course of the last fifteen months he has bravely endured enormous medical challenges. This past year has been emotionally and financially devastating to our family. Because of his diagnoses, and highly variant prognosis, we are left filled with great uncertainty about Kai’s quality of life for the future and enormous present-day challenges in providing Kai with the services, and environment, that his disabilities require.
The Whole Story
Kai was born with severe tremors throughout his body. When he was only a few hours old, Kai was transported via ambulance to the NICU at Pittsburgh Children’s Hospital. They immediately began performing all kinds of testing on him (including MRI’s, EEG’s, blood testing and urinalysis, even a spinal tap). After several days of invasive testing, his clinical team determined that Kai had been born with an underdeveloped neurological system. There were no indications of other health issues. Although the days after Kai’s birth had been traumatic we were advised that no other health challenges were detected and that he was, and should remain, a healthy boy.
This proved to be true over his first few months of life until one day in the beginning of September (2017) Kai began having seizures. I cannot even begin to express how terrifying this was for us. We returned to Pittsburgh Children’s Hospital and Kai was immediately admitted. They were not able to treat his seizures until they figured out why he was having them so, for five agonizing days we watched baby Kai seize over and over again. Many tests and procedures later, Kai was diagnosed with Infantile Spasms (IS), a rare seizure disorder that only presents within the first year of life.
After meeting with his neurological care team, we decided to opt for a medication called H.P. Acthar Gel because, it had the highest success rate in clinical trials. This medication has the capability to stop spasms by resetting a baby’s brain waves through hormone therapy in order to interrupt the abnormal brain activity that is occurring.
Kai began receiving injections into a specific set of muscles in his thighs. The next challenge, which we were not anticipating, was that our major medical insurance would not cover Kai to stay in-patient at the hospital to receive this treatment or cover a post-acute rehab where the injections could be administered by a registered nurse. With no other option, we began learning how to administer these critical injections to Kai ourselves.
Over the course of the following month, we administered approximately fifty of these injections to our baby boy and watched with baited breath as his seizures became less and less frequent. Once Kai had completed his one-month course of treatment with this medication, he was admitted back into the Children’s Hospital in Pittsburgh for follow up testing and EEG monitoring.
We were beyond relieved to learn that the medication had worked, Kai’s brain was not showing any more of the irregular activity or sparks that are associated with seizures. We were told that there was risk of relapse and Kai would need to have another EEG done around the time of his first birthday but, we were so grateful for this hopeful prognosis.
As we watched Kai grow and develop over the following six months, we began noticing that his development was very different than that of our other children. He was not achieving developmental milestones in regard to: gross and fine motor activities, speech, eating, etc.
To our dismay, Kai’s neurologist not only validated our concerns she discovered other concerning factors in her physical evaluation of him (specifically that all of Kai’s muscles were becoming increasingly rigid and that he didn’t have the muscle tone he needed to be able to sit, crawl, stand, etc.). She told us that there were many neurological conditions that could be causing such symptoms and that Kai would need to be admitted to the hospital again for a sedated MRI, EEG, and genetic testing. She felt confident that there were other neurological issues in play that had not been discovered initially.
Three days after little Kai’s first birthday, he went in-patient at Golisano Children’s Hospital in Southwest Florida for the procedures and testing that had been recommended. The results of this testing left us feeling broken; filled with fear and sadness about the uncertainty of Kai’s future health and well-being. Although Kai’s EEG still showed no abnormal brain activity (which meant his risk for IS relapse was extremely low), the results of his MRI revealed that Kai’s brain had not developed properly.
MRI imaging showed that Kai’s ventricles (small fluid filled sacs on each side of the brain) were larger than they are supposed to be and were also asymmetric. Because of this size difference, Kai has less brain matter than he should. There is not anything that can be done to fix this condition. It is also impossible to know the implications this condition will have on Kai because it all depends on how Kai’s brain continues to develop over time, and if the ventricles remain the same, or God forbid, worsen.
What we do know is that Kai developed his infantile spasms from a genetic variance that was detected in this last series of testing. We also know that because his brain did not develop properly it is much harder for him to learn and develop. He has severe sensory integration issues and is presenting with many early signs and symptoms of autism. This recent development has had a debilitating impact on our ability to include Kai in family activities as simple as attending church or going shopping because, he goes into sensory overload and becomes inconsolably upset.
Kai’s current diagnoses include: history of infantile spasms, infant hypertonia, gross motor delay, opisthotonos (white matter disorder), genetic variance of KCNA2 and GABBR2, and autism spectrum disorder(s).
Current Challenges
Our present-day challenges are many. Over the past fifteen months, we have accrued an overwhelming amount of debt resulting from Kai’s care, and all the implications that it has had on our family. We will continue to have extensive out-of-pocket costs resulting from Kai’s future care. In addition, we are trying to relocate our family much closer to Kai’s neurological care team, and the children’s hospital where he has received his care, and where he needs to begin comprehensive out-patient therapies (physical, occupational, and speech).
For the past four months, he has been receiving his therapies in our home. Although we are grateful for these services, the out-patient therapies at the children’s hospital will be much more specialized and rigorous. Our family is currently living on one-income because Kai’s severe sensory integration issues, and other medical complexities, prevent him from being able to attend mainstream daycare programs.
We decided to initiate this Go Fund Me campaign because, we have relentlessly pursued all other possible avenues of financial support (including but not limited to: financial assistance programs with health care providers, state and federal disability programs, 401k loans and liquidation, the sale of our home, and the sale of personal property).
How you can Help
Above all, we believe in the power of prayer and positive thinking. If Kai’s story has been impactful to you, please include him in your prayers and share prayer requests with those in your religious or spiritual circles.
If you are able to contribute financially to our campaign, all donations are wholeheartedly appreciated (no donation size is too small). If you are not able to contribute to our campaign financially, please validate our campaign by sharing Kai’s story with your connections on social media outlets.
Our Inspiration
Our children, and all they depend on us for, are our inspiration. They are what keep us going each and every day. We are determined to continue “moving mountains” for Kai in order to provide him the best medical, therapeutic, cognitive, social, and emotional services possible; both in our home and through his clinical care team. By focusing on this goal, we will (at least) have the comfort of knowing that we did everything we possibly could to help him overcome, and learn to cope with, his disabilities.
If you have faith as small as a mustard seed you can say to this mountain “move" and it will move. (Matthew 17:20)
Organizer
TeamKai Kitchner
Organizer
Lake Placid, FL