Charles' Medical Fund
Donation protected
Doing this is so hard but I know we need the help. We do not know where to turn at this point. Right now our hearts hurt so badly. Our beautiful son, Charles, who is 5 1/2 has been given the biggest challenges a child should go through. He has had 3 brain surgeries and 2 spinal surgeries (as well as 8 other surgeries and is going in for foot surgery on November 1st). Our biggest struggle is something called Chiari Malformation which is when the cerebellum tonsils herniate past the Foramen Magnum. There are numerous different types and Charles started with Chiari 1 Malformation and now has Chiari 1.5 Malformation. The difference is now Charles' brainstem is herniating as well. This is causing him numerous issues and he is getting worse and worse. He has had 2 decompressions(the type of surgery to help with the symptoms-it does not go away) and has had a VP Shunt Placement after he developed Hydrocephalus post-op.
His latest MRI is heartbreaking. I will post images to explain more since it is hard to explain. At this point Charles needs to get to California to see the only Neurosurgeon that could possibly help. He is our only hope and just to get the second opinion for him to look at his imaging and everything is $700. We would also then fly out to see the Neurosurgeon and we are not guaranteed flights with any organization but no matter what I would need to pay for my mom since she would need to come with me to help with our daughter. Then there is hotel costs since like flights you are not guaranteed a room at the RMH. With that comes a rental car, food and things like that. Insurance will not be paying for this appointment or future appointments or surgeries in California. From other families that have done what we are doing, they told us the hospital will possibly make a payment plan but even then we cannot afford it.
Charles sees over 10 specialists at this point and most of them are in Philadelphia(we are in Ocean County NJ-minimum of 2 hour drive $20 in gas, $5 in tolls and $4 in parking). He now has Epilepsy that we think is because of his Chiari and the damage it is causing. It isn't just Chiari that he suffers from, at 15 months old he was diagnosed with DiGeorge Syndrome which is a chromosomal deletion. This causes numerous things as well including immune issues that cause Charles to need to go to CHOP monthly for IVIG Therapy. I know I am all over the place and I apologize tremendously but I do not want to miss anything. Grant I know I am missing so many things regarding his health and things going on. It would be a book. Please if you have any questions regarding his conditions/treatments let me know!
The funds will be used for what was said above as well as gas, tolls and bills for while we are in California. As well as gas and tolls for when we need to go to CHOP. It is becoming harder and harder to afford traveling to CHOP. When surgery comes we will need funds for us to be out of work and in California. Our car(well my mother's car that she lets us use) is breaking and even the exhaust is being held by zip ties. I will increase the goal if needed and when we know more.
I want to thank everyone who has read this far and please know it means so much to us. Any amount helps and if you cannot help please share. We need this more than anything right now. This is our last option and we do not know what else to do. Again thank you so much!
*I am posting the MRI images. You will see different colors and things showing what is different with his MRI. Please ask questions if need.
His latest MRI is heartbreaking. I will post images to explain more since it is hard to explain. At this point Charles needs to get to California to see the only Neurosurgeon that could possibly help. He is our only hope and just to get the second opinion for him to look at his imaging and everything is $700. We would also then fly out to see the Neurosurgeon and we are not guaranteed flights with any organization but no matter what I would need to pay for my mom since she would need to come with me to help with our daughter. Then there is hotel costs since like flights you are not guaranteed a room at the RMH. With that comes a rental car, food and things like that. Insurance will not be paying for this appointment or future appointments or surgeries in California. From other families that have done what we are doing, they told us the hospital will possibly make a payment plan but even then we cannot afford it.
Charles sees over 10 specialists at this point and most of them are in Philadelphia(we are in Ocean County NJ-minimum of 2 hour drive $20 in gas, $5 in tolls and $4 in parking). He now has Epilepsy that we think is because of his Chiari and the damage it is causing. It isn't just Chiari that he suffers from, at 15 months old he was diagnosed with DiGeorge Syndrome which is a chromosomal deletion. This causes numerous things as well including immune issues that cause Charles to need to go to CHOP monthly for IVIG Therapy. I know I am all over the place and I apologize tremendously but I do not want to miss anything. Grant I know I am missing so many things regarding his health and things going on. It would be a book. Please if you have any questions regarding his conditions/treatments let me know!
The funds will be used for what was said above as well as gas, tolls and bills for while we are in California. As well as gas and tolls for when we need to go to CHOP. It is becoming harder and harder to afford traveling to CHOP. When surgery comes we will need funds for us to be out of work and in California. Our car(well my mother's car that she lets us use) is breaking and even the exhaust is being held by zip ties. I will increase the goal if needed and when we know more.
I want to thank everyone who has read this far and please know it means so much to us. Any amount helps and if you cannot help please share. We need this more than anything right now. This is our last option and we do not know what else to do. Again thank you so much!
*I am posting the MRI images. You will see different colors and things showing what is different with his MRI. Please ask questions if need.
Organizer
George Heiser
Organizer
Seaside Heights, NJ
