Pries family
Spende geschützt
Since a few months old, Evelyn has always showed small signs of concern. Large and fine motor delays, missed milestones, chronic croup, breathing spells, gene mutations. She had been through rounds of neurology and genetics at that time, but lacked sufficient symptoms to pinpoint a specific disorder.
So her parents took a break once she finally learned to walk (around two year of age) and let her be herself for a while. Just simply be a kid. She was always such a happy and sweet baby, and they didn’t want that stolen from her.
In fall of last school year (2018) Evelyn’s behavior changed drastically. She preferred solitude, her moods were unstable, she screamed of headaches and stomachaches, and wet the bed nearly nightly. She began falling often, causing numerous concussions. And by numerous, they know of eight confirmed concussions.
In April of this year she was diagnosed with epilepsy. We are talking hundreds of thousands of seizures. Over this summer her cognitive abilities have regressed rapidly. She can no longer read, her memory is extremely poor and she speaks incoherently often. As recent as this week she is occasionally unable to recite her alphabet or count on her fingers. They notice the decline continue.
She was admitted again early December for yet another EEG and discharge is still occurring in her brain. Though these seizure characteristics don’t last long enough to evolve into a full seizure, they are still happening often and scattered throughout her EEG. Despite six different medications, they have been unable to completely control the activity and they are officially considered intractable seizures, or uncontrollable with medication.
It has been confirmed her cognitive regression is a separate symptom, and likely a genetic disorder is causing all of her issues. They currently are working with genetics for extensive exome sequencing to determine if a disorder is to blame and if so how that disorder will look for Evie’s future. In the interim the have been instructed to keep her as comfortable as possible and use alternative methods to help control her brain discharge as much as they can.
Robert and Keegan have decided to begin CBD treatment for Evie in addition to her current medications. The starting dose for her begins at $125 per week and could be increased based on her response. Of course the state of Wisconsin has legalized CBD, but it has strict controls and funding assistance is limited. In addition, they will be returning to the drawing board for a more natural approach for Evie, and doing some more extensive testing to see what other remedies may assist in improving her quality of life.
She’s an amazing child and has been stronger than Robert or Keegan most days. Her love for them has grown, her days with others filled with joy, and she is pretty oblivious to the extent of her condition. She rarely feels pain and lives in Lala Land most days. (It doesn’t seem like such a bad place to be. ) Recently days have been difficult for her, but she keeps pushing through.
Robert and Keegan want to thank everyone for their support these last few months. The messages and visits and helping out has been appreciated more then you could imagine. They are so grateful and honored to have the opportunity to be with her every step of the way because of the support system around them. ♥️
So her parents took a break once she finally learned to walk (around two year of age) and let her be herself for a while. Just simply be a kid. She was always such a happy and sweet baby, and they didn’t want that stolen from her.
In fall of last school year (2018) Evelyn’s behavior changed drastically. She preferred solitude, her moods were unstable, she screamed of headaches and stomachaches, and wet the bed nearly nightly. She began falling often, causing numerous concussions. And by numerous, they know of eight confirmed concussions.
In April of this year she was diagnosed with epilepsy. We are talking hundreds of thousands of seizures. Over this summer her cognitive abilities have regressed rapidly. She can no longer read, her memory is extremely poor and she speaks incoherently often. As recent as this week she is occasionally unable to recite her alphabet or count on her fingers. They notice the decline continue.
She was admitted again early December for yet another EEG and discharge is still occurring in her brain. Though these seizure characteristics don’t last long enough to evolve into a full seizure, they are still happening often and scattered throughout her EEG. Despite six different medications, they have been unable to completely control the activity and they are officially considered intractable seizures, or uncontrollable with medication.
It has been confirmed her cognitive regression is a separate symptom, and likely a genetic disorder is causing all of her issues. They currently are working with genetics for extensive exome sequencing to determine if a disorder is to blame and if so how that disorder will look for Evie’s future. In the interim the have been instructed to keep her as comfortable as possible and use alternative methods to help control her brain discharge as much as they can.
Robert and Keegan have decided to begin CBD treatment for Evie in addition to her current medications. The starting dose for her begins at $125 per week and could be increased based on her response. Of course the state of Wisconsin has legalized CBD, but it has strict controls and funding assistance is limited. In addition, they will be returning to the drawing board for a more natural approach for Evie, and doing some more extensive testing to see what other remedies may assist in improving her quality of life.
She’s an amazing child and has been stronger than Robert or Keegan most days. Her love for them has grown, her days with others filled with joy, and she is pretty oblivious to the extent of her condition. She rarely feels pain and lives in Lala Land most days. (It doesn’t seem like such a bad place to be. ) Recently days have been difficult for her, but she keeps pushing through.
Robert and Keegan want to thank everyone for their support these last few months. The messages and visits and helping out has been appreciated more then you could imagine. They are so grateful and honored to have the opportunity to be with her every step of the way because of the support system around them. ♥️
Organisator
Kaycee Sipe
Organisator
Green Bay, WI