Make Memories for Holden
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My 6 year old son, Holden, was recently diagnosed with a degenerative form of epilepsy called ESES. This form of epilepsy is very rare (only about 1000 documented cases in the world) and incredib
ly hard to treat. It causes regression in behavior, language, motor skills, and cognition, as well as impact on memory. Last year, Holden was in the advanced reading classes in kindergarten, scored as advanced on IQ tests, and was a normal, happy kid. Now he scores as "impaired" on IQ tests for everything related to language and memory, he shows behaviors of uncontrolled ADHD (but not controllable by medications because it's disease related), and he's uncoordinated and highly emotional (we're not sure if it's the disease or the massive doses of medications he's on). We're working on an IEP because he's presently failing out of first grade. He's increasingly frustrated and occasionally aggressive because he knows what he's lost. We're starting a more aggressive treatment regimen, because he will continue to regress until the seizures are controlled..... and they are the hardest kind out there to control. I was told to expect further regression, but we don't know how much. He could wake up any day with no ability to speak or understand language, with no memory at all, or with the mental capacity of a toddler.
I'm trying to come to grips with this diagnosis, and I've decided that, since I don't know what tomorrow will bring, I want to make every day as happy as possible for him and make as many good memories as we can. While he still has the mental capacity to enjoy it, I want to take him to Disney.
I know this may seem silly, but I have to do something, and this is all I can think to do for him right now. I want to take him on a dream vacation, and give him the time of his life, while I still can. I'm a divorced mom of three, and medical bills have been constant these last few months, so money is tight. I'm embarrassed to ask this, but figured if even a few people are willing to help out a bit, maybe I can make his dreams come true.
Thank you for considering!
Nicole
ly hard to treat. It causes regression in behavior, language, motor skills, and cognition, as well as impact on memory. Last year, Holden was in the advanced reading classes in kindergarten, scored as advanced on IQ tests, and was a normal, happy kid. Now he scores as "impaired" on IQ tests for everything related to language and memory, he shows behaviors of uncontrolled ADHD (but not controllable by medications because it's disease related), and he's uncoordinated and highly emotional (we're not sure if it's the disease or the massive doses of medications he's on). We're working on an IEP because he's presently failing out of first grade. He's increasingly frustrated and occasionally aggressive because he knows what he's lost. We're starting a more aggressive treatment regimen, because he will continue to regress until the seizures are controlled..... and they are the hardest kind out there to control. I was told to expect further regression, but we don't know how much. He could wake up any day with no ability to speak or understand language, with no memory at all, or with the mental capacity of a toddler. I'm trying to come to grips with this diagnosis, and I've decided that, since I don't know what tomorrow will bring, I want to make every day as happy as possible for him and make as many good memories as we can. While he still has the mental capacity to enjoy it, I want to take him to Disney.
I know this may seem silly, but I have to do something, and this is all I can think to do for him right now. I want to take him on a dream vacation, and give him the time of his life, while I still can. I'm a divorced mom of three, and medical bills have been constant these last few months, so money is tight. I'm embarrassed to ask this, but figured if even a few people are willing to help out a bit, maybe I can make his dreams come true.
Thank you for considering!
Nicole
Organizer
Nicole Duncan Kuhlenberg
Organizer
Batavia, OH
