Every day is a struggle for 5 year old Charles. He suffers from a rare brain condition called Chiari Malformation. So far he has had a total of 13 surgeries which include brain and spinal surgeries. Their last hope is a neurosurgeon in California. Unfortunately this is not covered by insurance. Please donate if you can and keep sharing. If you know of any fundraising options please email [email protected] or message the page and ask for OCSN2
https://www.gofundme.com/f/fxg27-charles039-medical-fund?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cp+share-sheet
Seaside Heights: Help Local Family Save Their Son
Ann-Marie Hendrickson
The family should contact a motorcycle club. They will set up a benefit ride.
David Meyer any idea which ones?
My son has that and prayers are sent to the family .
Have they tried Dr. Maggio in Wall? I have Chiari Malformation and he was excellent. Also, David Meyer motorcycle clubs really do that?
Roberta-Max Omictin yes, they always fundraise. Poker runs, etc.
Sharon Lynn Huber Wow that is so awesome!! Wish we heard more about this
Roberta-Max Omictin yes motorcycle clubs give til it hurts. I’ve organized many benefits over the years. The crew is my target demographic.
Roberta-Max Omictin he is not a TRUE chiari malformation specialist
Danielle Icebx Bartolotta that’s true.
Roberta-Max Omictin every Saturday and Sunday when you see most bikes out in big groups, it’s usually for a poker run, raising money for vets, animals, disabled kids.
David Meyer thank you for the info!
Also Dr Thomas Steineke NJ Neuro Institute in Edison NJ. He is the best and specializes in pediatrics. He did my suregery
Donna Ebberup-Ciervo not a TRUE chiari malformation specialist.
My Mom had a Chiari malformation, luckily surgery helped her.
My friend has 4 children with this and they go to chop.in philly. Prayers to the family
Michele Polyak Boedeker we do go to chop but there is nothing more they can do for him he has had 3 brain surgeries and 2 spinal surgeries and nothing is helping him but thank you
Dawn Massa Check COOPER University HOSPITAL in Camden. Check out their website and their doctors. You can check by department. Also COOOER UNIVERSITY HEALTH US ON FB
Contact Little by Little Foundation in Toms River. They may be able to help.
Thank you all and yes they have tried all of these drs. This dr in california is their last hope
Ocean County Scanner News Dr Richard Anderson. One of the few actual Chiari experts. Out of Columbia University and St. Jude’s.
Cooper? Or children’s hospital in Philadelphia?
Melissa Brantley Cooper.
My son has Chiari malformation type one. There are angel flights to get to California. There are support sites that give a lot of information.
Why a surgeon in California.
Can you drop the family a message and ask them to pm me?
Chiari isn’t rare. We just don’t know much about it. One out of every 100 people autopsies have a type of Chiari malformation. We do more MRIs now and they are learning more all the time.
That’s not to say this isn’t extremely serious and brings with it many co morbid conditions.
There’s always something besides Chiari that will rear it’s ugly head.
Mindy Murray Moich they doctor in California is their last hope he has more than just chiari
Allison DeStefano ughhh. Speechless. This hits close to home. Are family and family friends on this site?
We can get together a few things pretty fast to make some money for them.
I will need alot of help, as my parents just moved in. My dad’s not well, husband getting tests and my own son( knock on wood) has Chiari.
Mindy Murray Moich I’m going to message you. I’m handling most of the fundraising. I am good friends with the family
Cooper University Health Care. They are in FB. CONTACT THEM
Why is this not covered by insurance. If he were an illegal there would be no problem
We are going to see Dr.Grant in California because he is our last hope. We sadly are not the only family in the process to get to California. We are not guaranteed any flights, someone else we know with Chiari is also having trouble with flights. There are only a very few TRUE Chiari specialists unfortunately. He has so many different comorid conditions with this it is heartbreaking. His MRIs are getting worse. He has been decompressed 2 times, has a VP Shunt after developing Hydrocepulas post-op and 2 Syringo Sub-arachnoid Shunts. Now his brainstem and hypothalamus are herinating as well. He developed Epilepsy the end of June also. He cries in pain daily, has a hard time writing and coloring, using the bathroom(both ways) is getting hard. We have seen numerous doctors here and with extensive research California is our best bet.
Ashley Massa have you tried Dr. Bolognese in NY, Dr. Henderson in MD and Dr. Rosner in NC? All true chiari malformation specialist
Ashley Massa also Dr. Greenfield in NY
Hope hes getting better I know he got sick again I really hope you can get him the help he needs
Christina Ctorides Foley do you recall any organizations beside RMDH that assisted? I know its been for the history of ever…but ya know.
Andrea Maiorana D’Ottavio
Air Charity Network for assistance with flights
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Praying!
They should try dr mark Souweidane at Cornell. He performed my son’s brain surgery and is amazing in rare cases.
Sending prayers
My 8yr old daughter was diagnosed a yr ago with this
We see Dr Kennedy at CHOP’S
https://www.gofundme.com/f/fxg27-charles039-medical-fund
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