No help for encephalitis survivors?

I have been trying to find my 16 month old son and my family some type of financial relief. There is relief for people suffering from autism, diabietes (sp), Spinal cord injury, even ADHD! I understand that these are life altering disabilities to but seeing what my son has gone through just makes me so upset that there is not people reaching out to others like him. This is such a devastating disease and literally turned my son into a (hate to say it) Vegetable for the time being (praying he gets better). It just upsets me so much that America has so many programs to support children overseas and it is a great idea to help others like that but you call any of those programs and they refuse to take any child in America. It seems the only country that is even aware of the severity of encephalitis is the UK. I wish I had the money to start a program and help all those suffering and that have suffered encephalitis. There needs to be more awareness of this disease and we need to help these people. Excuse my rant everyone I just feel so bad for all that have to endure this and for those adults that can't work and have no one to turn to. My son has me but who do those have that are grown and had to rely on only themelves before encephalitis changed their life? I pray you all find peace and can conquer this horrible monster we call encephalitis.

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I'm interested to follow this discussion and see if there's something I've missed. We've been blessed enough to have had amazing support since January when our son went in to his coma. Even a social worker we had at UCLA helped us by getting a grant to pay our mortgage for a month. My husband's small business is declaring bankruptcy, it's fine because being with our son is the most important thing. During our nearly 3 months at 3 different PICu's we were broken hearted over the number of children who spent days and even nights alone because their families had to work. I want to do something as well once we are free of the place we are now.

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We were fortunate enough to get assistance for 1 month mortgage from the hospital. I'm speaking more in reference to long term or heck even now. That one thing was so nice but like your son our son was in a coma and I have been and will be out of work for a while. I am very worried how we are going to get my son the attention he needs. I'm so glad he is alive but now I want him to have all the chances at life that all children deserve to get. If I return to work my options on daycare are extremely limited and pricey. Any type of government assistance goes out the door also. He needs so much intensive therapy that i'm worried about co pays and how I will afford any of my bills to keep a roof over my childrens head and food in their mouth. I have been looking for a sponsor or program to help my son receive therapy and the equipment he needs (Ped. wheelchair and learning tools). It's like encephalitis is not well know so no one is reaching out as much as they are for others types of needs. Even here at the hospital so few people understand the full effects of encephalitis and don't understand how to care for my son. I think it freaks some of the nurses out. They look at this big boy that appears so healthy but don't realize how much he has really suffered and what he can't do. I look on the internet and see all these companies reaching out to children with so many problems and encephalitis is not one of them. I just want all who have suffered to have as much opportunity as all the other special needs children and adults. I will always do everything in my power to make sure my sons receives all the care he can. It just disappoints me that so little people know the true impact of this disease. I never did until now. I have found a few organizations that help but not in Florida, Which is where we are. I'm sorry your husbands business is having to declare bankruptcy. You are so strong for having such a positive attitude in your situation. :)

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I'm not sure if I'm reading this right but....
"People with disabilities, including children, who have little income and few resources, also may be eligible for disability payments through the Supplemental Security Income (SSI) program. For more information about SSI, ask for Supplemental Security Income (SSI) (Publication No. 05-11000)."
: (see section on Benefits For Children With Disabilities)

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Ive been told to apply for SSI for Matthew. The social worker at the rehabilitation hospital he's at even said they'd help me with the paperwork. That does sound like something to look into for both of us. Will your son be able to attend any kind of rehab? Matthew has been fortunate enough to be at an excellent facility and they have services there for infants to children through 12 years of age. I'm trying to think of how you could find out if you have any near you. We started off by searching the web. This facility services many autistic children but also TBI patients. Even the doctors at UCLA didn't know about facilities besides the big one nearby, don't rely on them.

Matthew and I were talking tonight about how going through this has made us want to make a difference so many places. I do see, understand and feel your desire to make a difference and be recognized.

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Our parents went down the same road as both of you folks are. Please private message me.

As Bittify said SSDI should assit your child. My sister who is labelled Mentally Retarded new wording Developmentally Disabled. She has been part of the system for 55+ years the system has changed and inproved over the years but it is a tough fight the sooner you contact them the better your chances are for assistance beyone SSDI.

Contact your Board of Developmental Disabilties, if your State has a Arc contact them, please contact me I will help you find this agency. I know that assistance is available for your child. I can give you a lot of tips but I prefer to do it privately.

All parents please feel to contact me. I have worked hard to get the awareness out to our local County Boards.

I am also in contact with one lady who is also interested in bringing awareness of E. She also is looking at awareness from a caregivers point of view.

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Does anyone know if there are any rehabs close to the Dallas Texas area or Sherman that work with post E children.
My son is suffering from an Intellectual disability in school and we are not receiving any SSI. He is 9 yrs old and his IEP results are very low in reading and language skills thanks to short term memory loss and Left temporal lob damage.
Physically he is a active, sweet loving boy trying to keep up with his peers.
We are planning on a very active learning summer at the library, summer school, we do not want him to regress further .But at the same time not wear him out. :)
It has been almost 3 yrs. since the hospital stay and infection.
Thanks and God Bless.

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We are waiting on approval from SSI they said while my son is in the hospital he would only receive 30 a month. However it will take months to approve it anyway. We are headed to an in patient rehab in Jacksonville soon. I just disappoints me that there is more awareness and help for people with ADHD then people who have suffered E. I am hoping that we will financially be able to support his recovery when we get home. I still face the decision is it better financially for me to stay home with him and care for him or for me to return to work and find some sort of medical daycare. This is all still very new and i'm still very much in shock.

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My 18 month old grandaughter is in rehab. My husband and I, my sons godmother, family and friends are helping them. My heart breaks as I read this. We have raised enough money to keep my daughter in law out of work for about a year. My son is a teacher. He never took a sick day so he had sick leave and he was in the pool. They applied and received Medicaid for rehab as he had no insurance to cover it. You should apply for it if you haven't already. All states have supplemental insurance for children. Social worker can help you. My granddaughter is still undiagnosed . We have no idea where this will end. I think there is a foundation in NC at duke

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