JACK'S JOURNEY
Donation protected
Jack is a sweet little boy and his family needs our help. He will have to be going to Boston Children's Hospital soon and I know from experience myself that hotel, travel, food, gas, and even insurance doesn't even cover most of the costs he will need for testing. So please do what you can. They are like family to me and you all have been so generous in helping our family in our time of need its time for me to help with giving back by helping this little guy.
From Jack's Mom this morning. I know a lot of people are praying for our little guy Jack so I wanted to give you all an update. In January we found out Jacks unknown “episodes” were actually focal frontal lobe seizures after his 24 hour EEG detected them. His brain MRI was clear and we thanked God for that so we started him on seizure meds with Albany med pediatric neurology. With still no known cause of the seizures we started treatment with medications to hopefully stop the seizures but Jacks seizures have proven to be very stubborn and they happen pretty much daily despite being on 3 different medications. So Jacks neurologist ordered an epilepsy genetic work up in hopes of finding the cause and maybe figuring out a better treatment since certain genetic disorders are treated with specific medications. We got the results a few days ago and found out he has a positive rare genetic mutation that causes familial focal epilepsy with variable foci (FFEVF). Albany med does not have any cases of this condition in their network so they have advised we go to Boston Children’s hospital where hopefully they will be more familiar with his case and have better ideas for treatment. Please continue to pray for our Jack so he can be seizure free. We are hopeful !
If you would like to send a card, here is their address:
262 Marshville Road, Fort Plain, 13339
From Jack's Mom this morning. I know a lot of people are praying for our little guy Jack so I wanted to give you all an update. In January we found out Jacks unknown “episodes” were actually focal frontal lobe seizures after his 24 hour EEG detected them. His brain MRI was clear and we thanked God for that so we started him on seizure meds with Albany med pediatric neurology. With still no known cause of the seizures we started treatment with medications to hopefully stop the seizures but Jacks seizures have proven to be very stubborn and they happen pretty much daily despite being on 3 different medications. So Jacks neurologist ordered an epilepsy genetic work up in hopes of finding the cause and maybe figuring out a better treatment since certain genetic disorders are treated with specific medications. We got the results a few days ago and found out he has a positive rare genetic mutation that causes familial focal epilepsy with variable foci (FFEVF). Albany med does not have any cases of this condition in their network so they have advised we go to Boston Children’s hospital where hopefully they will be more familiar with his case and have better ideas for treatment. Please continue to pray for our Jack so he can be seizure free. We are hopeful !
If you would like to send a card, here is their address:
262 Marshville Road, Fort Plain, 13339
Organizer and beneficiary
Beth Snyder
Organizer
Canajoharie, NY
Sarah Borchert
Beneficiary