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Help Charlie get a seizure therapy dog!

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Updated in January 2024: Charlie has learned since December that he is not a good candidate for the unique brain surgery to assist him until he is more developed (pre-teen). The Mayo Clinic neurosurgery teams have come together and determined he IS a great fit however, for a seizure-recognizing dog, that could be with him day and night. The cost of securing your “down payment” towards a therapy dog trained uniquely to Charlie’s scent and system, is 20k! Much of the money raised here to date has been sent towards medical bills but now forward, the family is hoping to raise enough to use towards this down payment for the dog. Once they can send 20k, it is still a lengthy 2 year wait before the animal is trained to his scent and symptoms. Let’s please keep the faith and keep this family close as we try to help secure a puppy just for Charlie!! If you haven’t read the full story, follow along below - and THANK YOU, and God bless you all, for caring about this sweet family.


Many of us remember key moments from stories through life such as "I remember that kid in 4th grade who had epilepsy", or "I remember that kid in high school who had a seizure and lost his license for 6 months." Epilepsy is fairly rare in itself, and most of us know nothing about it, until our lives are touched directly.

My life has been touched directly by Charlie. He is the son of one of my rockstar colleagues at work, and in January of 2023 was diagnosed with epilepsy. Below a snapshot of Charlie and his mom, Danielle, rocking Purple Hershey shirts (Yes she works for Hershey!) and purple is the color of epilepsy awareness.


We've been on this journey with Charlie and his family with Danielle keeping me in the loop. I started this GoFundMe at the request of many of our Hershey family colleagues who want to help, but also for the broader family and friends and anyone who feels that they were also touched by the story of Charlie, or touched by epilepsy and know the pain and strain this can cause on a family and life.

Your donation will help Charlie's family be able to afford the incredible cost of the surgeries, the trips to Minnesota, the ability to miss work and not stress about daily living costs, and ultimately enable Charlie, the sweet-cheeks little baby, to have his family close to him during a very scary time, having brain surgery as a child.

A little of the story of Charlie below, in the mother's words:

In January of 2023, we received the shocking news that our 4 year old has pediatric epilepsy. A long, scary ride of 2023 lead us to the Mayo Clinic where he was officially diagnosed in November at as epilepsy with focal seizures with impaired awareness.

From January '23 through mid-summer, our local hospital tried multiple medications which he either had an allergic reaction to, or adverse reactions. As Charlie worsened despite these attempts, they advised he seek care at a higher level institute - so we went to CHOP - Children’s Hospital of Philadelphia. Unfortunately, after months of the CHOP program, Charlie still progressively worsened with a major grand mal seizure occurring in September.

After praying and hanging on to hope, Charlie was accepted to the Mayo Clinic’s highly selective pediatric neurology program in Rochester, Minnesota.

Once at Mayo Clinic in Minnesota, Charlie has undergone multiple tests, EEGs, MRIs, metabolic testing, genome sequencing and much, much more, all trying to solve the root cause of the issues and stop them.

Shockingly, in a short 15 hour EEG, they were able to find that in every 15 second interval, he had seizure activity for at least 8 seconds. Which means for over 32 seconds of a minute, there is seizure activity. Watching him go through this, or knowing he's going through it even if silently, hurts my heart.

Charlie’s official diagnosis is Focal Epilepsy with focal seizures with impaired awareness. His seizures all come from the occipital lobe, which is classified as rare and a “prime state of real estate.”

As the pediatric neurosurgeons have explained to us, a brain abnormality has been found and puts him as a potential candidate for brain surgery that will “disconnect” this part of the brain. The risks of this can be upwards to 25 to 50% of vision loss, which would classify him as legally blind.

Facts: 1 in 26 people will develop epilepsy. 470,000 children in the world are living with epilepsy. In that population, 25% of these children will be drug resistant epilepsy, where the treatment options are limited and daily seizure activity affects their quality of life, but all medication options have failed to help.

Our sweet Charlie boy is one of those children.


From NJ to Pennsylvania to Minnesota - we have been on an 11 month journey in a fight for answers and help while watching our boy regress more and more with seizure activity for over 30 seconds of every minute of his life. Focal seizures are not the same as what some expect to see, and while Charlie has grand mal seizures at time, he has seizures in front of our family and friends everyday that most wouldn’t even realize are seizures.

In the next few weeks as we look forward to holidays and being together for the end of the year, the family will wait for an official decision from the Mayo Neurological Conference to review Charlie’s case. We are praying for the best hands to take on Charlie's case.

The family have also been advised to begin the process for getting a seizure/therapy dog for Charlie as this can take very long and a major financial investment. The family is looking at multiple trips to Minnesota in their future, and will unfortunately need to make the trip by car every time, as it’s unsafe for Charlie to travel via airplane. Recently after his first visit, his dad had to fly up and meet Danielle and Charlie to bring them home because the flight there had gone so poorly for him.


As you've read from the eyes of his mama, Danielle, this will be an incredible strain on their family, in New Jersey, as Mom, Dad and children will all have to uproot and stay close to Charlie in Minnesota at the Mayo Clinic for his surgery, recovery and long road ahead as they continue to understand the impact this has had on his brain and future life as he adjusts.


If this has touched your heart as it has touched mine, please consider a donation to Charlie's cause. His family will continue to be by his side for as they try to acquire an epilepsy therapy dog, (the dogs are specially trained to identify when the child is having a seizure) his many future hospital trips, his brain surgery and all the future unknowns that await him.

Thank you for reading the story of Charlie!
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Donations 

  • James Yen
    • $100 
    • 18 d
  • Tony Pitcher
    • $100 
    • 18 d
  • Adam Koehr
    • $100 
    • 18 d
  • Troy Grubb
    • $100 
    • 18 d
  • Angie Brenza
    • $100 
    • 25 d
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Organizer and beneficiary

Suzanne Moran
Organizer
Succasunna, NJ
Danielle Weynberg
Beneficiary

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