Support Ben's TSC Fight
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Please visit Ben's FB page for regular updates https://www.facebook.com/HopeforSuperBen
Latest as of March 2015: Just a quick update, we unfortunately have not gained seizure control, even after trying two new meds and maxing them out. He is now on 4 meds and we did hear back from NYU and have had several discussions with the new neurologist and neurosurgeon there and feel very confident in their abilities. We will be moving forward with brain surgery hopefully sometime in the next 8 weeks. It's all extremely scary, but we feel it is the right step for Ben. Our hope is to remove the tuber in his occipital lobe and hopefully remove another tuber causing the majority of his seizures. This will be a two part surgery and our stay will probably be around 3-4 weeks. Now we are waiting on the dates and to be scheduled in. We will keep you all posted and appreciate all prayers from the bottom of our hearts.
Original Post:
My nephew Ben deserves the best possible care and a quality of life that provides him with a world full of opportunity.
Please help us in raising money for the Ruppe Family ( James and Rebecca) to cover medical and care expenses for their son, James Benjamin Ken Ruppe born October 23, 2013 at 8:44AM. Baby Ben was born with a life debilitating disorder known as Tuberous Scerlosis (TSC). Ben was born with 8+ tumors on his heart and many tubers (tumors) on his brain. Rebecca and James are working with specialists of this disorder from the TS Alliance in Atlanta, Alabama and at Boston's Childrens hospital to treat his seizures and provide the best possible treatment plan. He is having dozens of seizures a day and is on 3 different seizure medications.
Every visit to the neurologist that knows how to best treat the symptoms of these disorders cost $400 and is not covered by Medicaid. In addition, he sees 4 different specialists all requiring additional medical expenses. He is also a twin survivor but his sibling passed away early in the pregnancy. She is an Angel of God now.
I believe God has chosen my sister Rebecca and Brother In Law James with the gift of my beautiful nephew Ben and that they will rise to the challenge providing him with a wonderful life. This does not ease the daily challenges, financial burden and life struggles of raising a child that requires special care. Something most of will never have to face, thankfully.
Please help us in raising money that will be used soley for his medical expenses and care.
Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism.
We appreciate your donations and prayers that healing hands provide him with a quality of life filled with happiness.
Love,
Amanda & Ruppe Family
Latest as of March 2015: Just a quick update, we unfortunately have not gained seizure control, even after trying two new meds and maxing them out. He is now on 4 meds and we did hear back from NYU and have had several discussions with the new neurologist and neurosurgeon there and feel very confident in their abilities. We will be moving forward with brain surgery hopefully sometime in the next 8 weeks. It's all extremely scary, but we feel it is the right step for Ben. Our hope is to remove the tuber in his occipital lobe and hopefully remove another tuber causing the majority of his seizures. This will be a two part surgery and our stay will probably be around 3-4 weeks. Now we are waiting on the dates and to be scheduled in. We will keep you all posted and appreciate all prayers from the bottom of our hearts.
Original Post:
My nephew Ben deserves the best possible care and a quality of life that provides him with a world full of opportunity.
Please help us in raising money for the Ruppe Family ( James and Rebecca) to cover medical and care expenses for their son, James Benjamin Ken Ruppe born October 23, 2013 at 8:44AM. Baby Ben was born with a life debilitating disorder known as Tuberous Scerlosis (TSC). Ben was born with 8+ tumors on his heart and many tubers (tumors) on his brain. Rebecca and James are working with specialists of this disorder from the TS Alliance in Atlanta, Alabama and at Boston's Childrens hospital to treat his seizures and provide the best possible treatment plan. He is having dozens of seizures a day and is on 3 different seizure medications.
Every visit to the neurologist that knows how to best treat the symptoms of these disorders cost $400 and is not covered by Medicaid. In addition, he sees 4 different specialists all requiring additional medical expenses. He is also a twin survivor but his sibling passed away early in the pregnancy. She is an Angel of God now.
I believe God has chosen my sister Rebecca and Brother In Law James with the gift of my beautiful nephew Ben and that they will rise to the challenge providing him with a wonderful life. This does not ease the daily challenges, financial burden and life struggles of raising a child that requires special care. Something most of will never have to face, thankfully.
Please help us in raising money that will be used soley for his medical expenses and care.
Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism.
We appreciate your donations and prayers that healing hands provide him with a quality of life filled with happiness.
Love,
Amanda & Ruppe Family
Organizer
Amanda Brown
Organizer
Cumming, GA
