To: Rep. Perry, L.,
Subject: Please Let the Body hear HB105, pass HB105 out of rules
Date: 2014-02-10T22:12:08Z
Body:
My name is Shawnan Mayo, and I am writing to you today to ask you to please let the body hear HB105, please pass HB105 out of rules. This issue is very personal to me, as Epilepsy affects my family directly.
I have heard the argument many times throughout my life that "people with epilepsy can live normal lives, it doesn't kill people." I use to believe this until my nephew Kadan (my brother's son) enveloped seizures at 18 months of age and I quickly saw that his life was going to be anything but normal. At that time his parents were given the options of two medications; one would affect him mentally, the other was likely to cause liver problem. What kind of choice was that?? Every medication the doctors put him on had serious side effects and none of them stopped him from having multiple seizures daily. On August 11, 2010 he had his finally seizure. Yes, a seizure killed my nephew, he was only 14 years old.
About a year before Kadan passed away my niece Charley (my sisters daughter) started having seizures,and my sisters life has never been the same since. Charley's seizures have affected her personality, her ability to learn and her ability to play like other kids her age. Like Kadan, the medications that she is taking have serious side effects and they are not preventing her from having the seizures. Just after Kadan passed away Charley started asking if she was going to die too. She was only 4 years old! A four year old should not have to be worried about dieing.
I am now a mother of two children. My son, Jacob, was not yet two years old when Kadan passed away, he doesn't remember him. Jacob has so many of the same interests and mannerisms as Kadan, I know they would have had a strong bond but unfortunately they won't get the chance. My daughter, Katie, is 21 months old and I have recently started noticing some "odd behavior" in her; similar to that which Charley had a few months before her first seizure. I have been told to watch Katie closely but nothing else can be done for her at this time. I just have to wait it out and see. I pray every day that whatever is going on with her that it is not seizures. I pray that she is able to grow and develop properly and without issues. But, in the back of my mind I am of course continually asking... "What If?"
I have heard the argument many times throughout my life that "people with epilepsy can live normal lives, it doesn't kill people." I use to believe this until my nephew Kadan (my brother's son) enveloped seizures at 18 months of age and I quickly saw that his life was going to be anything but normal. At that time his parents were given the options of two medications; one would affect him mentally, the other was likely to cause liver problem. What kind of choice was that?? Every medication the doctors put him on had serious side effects and none of them stopped him from having multiple seizures daily. On August 11, 2010 he had his finally seizure. Yes, a seizure killed my nephew, he was only 14 years old.
About a year before Kadan passed away my niece Charley (my sisters daughter) started having seizures,and my sisters life has never been the same since. Charley's seizures have affected her personality, her ability to learn and her ability to play like other kids her age. Like Kadan, the medications that she is taking have serious side effects and they are not preventing her from having the seizures. Just after Kadan passed away Charley started asking if she was going to die too. She was only 4 years old! A four year old should not have to be worried about dieing.
I am now a mother of two children. My son, Jacob, was not yet two years old when Kadan passed away, he doesn't remember him. Jacob has so many of the same interests and mannerisms as Kadan, I know they would have had a strong bond but unfortunately they won't get the chance. My daughter, Katie, is 21 months old and I have recently started noticing some "odd behavior" in her; similar to that which Charley had a few months before her first seizure. I have been told to watch Katie closely but nothing else can be done for her at this time. I just have to wait it out and see. I pray every day that whatever is going on with her that it is not seizures. I pray that she is able to grow and develop properly and without issues. But, in the back of my mind I am of course continually asking... "What If?"
As a parent I hope I am not faced with the situation that would lead me to seek the High CBD/Low THC cannabis extract for my child. But, as a parent I would like that option if is in fact needed. The medications currently being given to these children with Epilepsy already have serious side effects and they aren't working. We need to allow parents the opportunity to try something else.
I urge you to please support HB105. It is too late for Kadan, but it is not too late for Charley and all the other children in Utah who struggle every day with Epilepsy.
Thank you,
Shawnan Mayo