Seize Epilepsy, Help Kaitlyn Fight!
Spende geschützt
Kaitlyn's Story
On February 24th, 2008 I was blessed with a little baby girl, Kaitlyn Taylor Skinner. She appeared to be normal just as any other child, but months passed and I noticed she was not reaching any of her milestones. This caused great concern for me. As many of you know, I'm a nurse and being in the medical world, I knew what was normal and what was not. I pondered and thought, "Well no child is the same and children reach their milestones differently." At the age of 4 months, I began to notice what I described as a prolonged startled reflex which Kaitlyn would stop breathing. Upon each event it became longer and longer until I reached out to her pediatrician, which referred us to a pediatric neurologist. Upon consultation I was told, "There's nothing wrong with her, you're only being a nurse." These very words brought about disbelief and rage. How could someone in a field that I worked so diligently in speak that way?
The events continued with Kaitlyn without any explained answers until 8 months later. We were called by the same neurologist, "I'm sorry to inform you that your daughter Kaitlyn has been having seizure activity in her brain every 2 to 3 seconds." Hearing those words spoken to me robbed every ounce of joy from my body. That call explained why my child couldn't talk, walk, reach, or hold her head up. I questioned God, why? Why does this innocent child have to go through this? Kaitlyn was placed on several medications to control the seizure activity in her brain. Each medication would work for a few months and then we were back to the drawing board. We later decided to get a second opinion in Birmingham at Childrens Hospital which she continued to have routine visits there for 6 years with her seizures pretty much under control.
It was December 25th, 2015 that Kaitlyn began to behave very bizarre and in a frightening way. She had this wild look upon her face with constant lip smacking that she literally could not control. I held my sweet baby all day that day. Kaitlyn didn't close her eyes for over 48 hours. With each phone call I made to her neurologist, it seemed as if she was slipping away through our fingers. As the months progressed she began to have seizures known as atonic clonic seizures. They became so frequent that by July she was loosing her ability to walk. She couldn't stand for no longer than 30 seconds without falling and sustaining some sort of injury. The seizures then progressed to where she couldn't eat without choking. I was so afraid she would aspirate. I had exhausted all measures that I knew to take but no one would listen to my cry out for help. Through persistent family and friends assisting me with trying to seek help, I researched the epilepsy foundation website to see if their was any information that I could use. I retrieved several epilepsy centers and was caught up on which one to choose. Do I contact the center in Atlanta or the center in Memphis? That same day I received a random text from a family member telling me about a coworker's son and he was diagnosed with seizures and he had been seizure free for a year or more with the help of Lebonheur. I knew then at that moment that was my confirmation from God to take my child to Memphis.
Kaitlyn has been hospitalized three different times at Lebonheur Hospital in Memphis. They have worked fiercely to get Kaitlyn's seizures under control. She too became seizure free for over 6 months and she was tapered off one of her seizure medication that was $1,400 per month. She had been off that one medication for two days. We had plans for a celebration for her being seizure free and she was finally going to hang that pink bedazzled helmet up until she was hit with a grand mal seizure followed by several atonic and absent seizures. Kaitlyn was left with mild right side weakness from this. She was then placed back into the hospital with several tests performed and medication adjustments. It was then we were informed about her MRI/MRA/MRV results. Her skull was growing correctly, but her brain was not. She was experiencing mild brain volume loss. Once again such little words brought so much hurt. I felt like I was in a far distance looking at the doctor's mouth moving, but I wasn't hearing anything. I was devastated and asked the doctor to please explain this, how could this be, why was this happening? I just didn't understand why was my child being put through so much. Then I was told that she needs genetic testing to determine what's really going on with her so that she could be treated efficiently. Of course, I was informed that my insurance refused to pay a dime towards the testing. Typical insurance, right? When one door closes another one always open and with God all things are possible!
Join us on the journey to helping Kate become seizure FREE!
In the upcoming week we will begin to initiate fundraisers and a Go Fund Me page to help with the expenses associated with Kaitlyn's genetic testing. Once again we have private insurance, but the testing is not covered.
We ask that you continue to pray for Kaitlyn and her family!
Thanks,
L. Skinner
#DelayedButNotDenied
#FightLikeKate
#SeizeEpilepsy
On February 24th, 2008 I was blessed with a little baby girl, Kaitlyn Taylor Skinner. She appeared to be normal just as any other child, but months passed and I noticed she was not reaching any of her milestones. This caused great concern for me. As many of you know, I'm a nurse and being in the medical world, I knew what was normal and what was not. I pondered and thought, "Well no child is the same and children reach their milestones differently." At the age of 4 months, I began to notice what I described as a prolonged startled reflex which Kaitlyn would stop breathing. Upon each event it became longer and longer until I reached out to her pediatrician, which referred us to a pediatric neurologist. Upon consultation I was told, "There's nothing wrong with her, you're only being a nurse." These very words brought about disbelief and rage. How could someone in a field that I worked so diligently in speak that way?
The events continued with Kaitlyn without any explained answers until 8 months later. We were called by the same neurologist, "I'm sorry to inform you that your daughter Kaitlyn has been having seizure activity in her brain every 2 to 3 seconds." Hearing those words spoken to me robbed every ounce of joy from my body. That call explained why my child couldn't talk, walk, reach, or hold her head up. I questioned God, why? Why does this innocent child have to go through this? Kaitlyn was placed on several medications to control the seizure activity in her brain. Each medication would work for a few months and then we were back to the drawing board. We later decided to get a second opinion in Birmingham at Childrens Hospital which she continued to have routine visits there for 6 years with her seizures pretty much under control.
It was December 25th, 2015 that Kaitlyn began to behave very bizarre and in a frightening way. She had this wild look upon her face with constant lip smacking that she literally could not control. I held my sweet baby all day that day. Kaitlyn didn't close her eyes for over 48 hours. With each phone call I made to her neurologist, it seemed as if she was slipping away through our fingers. As the months progressed she began to have seizures known as atonic clonic seizures. They became so frequent that by July she was loosing her ability to walk. She couldn't stand for no longer than 30 seconds without falling and sustaining some sort of injury. The seizures then progressed to where she couldn't eat without choking. I was so afraid she would aspirate. I had exhausted all measures that I knew to take but no one would listen to my cry out for help. Through persistent family and friends assisting me with trying to seek help, I researched the epilepsy foundation website to see if their was any information that I could use. I retrieved several epilepsy centers and was caught up on which one to choose. Do I contact the center in Atlanta or the center in Memphis? That same day I received a random text from a family member telling me about a coworker's son and he was diagnosed with seizures and he had been seizure free for a year or more with the help of Lebonheur. I knew then at that moment that was my confirmation from God to take my child to Memphis.
Kaitlyn has been hospitalized three different times at Lebonheur Hospital in Memphis. They have worked fiercely to get Kaitlyn's seizures under control. She too became seizure free for over 6 months and she was tapered off one of her seizure medication that was $1,400 per month. She had been off that one medication for two days. We had plans for a celebration for her being seizure free and she was finally going to hang that pink bedazzled helmet up until she was hit with a grand mal seizure followed by several atonic and absent seizures. Kaitlyn was left with mild right side weakness from this. She was then placed back into the hospital with several tests performed and medication adjustments. It was then we were informed about her MRI/MRA/MRV results. Her skull was growing correctly, but her brain was not. She was experiencing mild brain volume loss. Once again such little words brought so much hurt. I felt like I was in a far distance looking at the doctor's mouth moving, but I wasn't hearing anything. I was devastated and asked the doctor to please explain this, how could this be, why was this happening? I just didn't understand why was my child being put through so much. Then I was told that she needs genetic testing to determine what's really going on with her so that she could be treated efficiently. Of course, I was informed that my insurance refused to pay a dime towards the testing. Typical insurance, right? When one door closes another one always open and with God all things are possible!
Join us on the journey to helping Kate become seizure FREE!
In the upcoming week we will begin to initiate fundraisers and a Go Fund Me page to help with the expenses associated with Kaitlyn's genetic testing. Once again we have private insurance, but the testing is not covered.
We ask that you continue to pray for Kaitlyn and her family!
Thanks,
L. Skinner
#DelayedButNotDenied
#FightLikeKate
#SeizeEpilepsy
Organisator und Spendenbegünstigter
L McCaa
Organisator
Carrollton, AL
Larinda McCaa
Spendenbegünstigte