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*Update on Robert:*
Robert had his biopsy, and the results are unfortunately not good. It turns out that he has an extremely very rare condition called Alexander’s Disease which is a terminal disorder that affects his nervous system. Unfortunately, there is no treatment for this condition past treating symptoms and keeping Robert comfortable. This is a heartbreaking diagnosis, and if you could keep Robert & his Family in your prayers, they would appreciate it.
Robert’s story:
For the past 2 ½ years, his parents were told that 11-year-old Robert had a psychological eating disorder. He has been on medication, through therapy after therapy, been made to force himself to eat, has endured countless feeding tubes to nourish his body, and has been tormented by the lack of desire to eat. All the while Robert maintained, vigilantly, that there was something wrong with him and that his condition was not psychological, only to have his claims refuted by a myriad of doctors. His ongoing ordeal has been a constant torment for this family, that’s breaking his parent’s heart. As a last chance intervention, Robert was admitted to a specialized hospital for eating disorders in Virginia for help.
While away, he became ill, confused, and suffered severe respiratory distress. He was transferred from his facility in Virginia to Virginia Children’s Hospital in Richmond Virginia. Robert was suffering from pneumococcal pneumonia, and he placed on a ventilator. While the family was there with him, they explained his 2 ½ year ordeal to the doctors. They decided to a ct-scan, and they were shocked to see that the ct-scan had revealed a tumor on his brain stem that inhibits the ability to swallow. This news was even more heartbreaking for the parents because it turns out that Robert was right all along, and suffering from nobody taking him seriously.
The tumor grew to the point that it’s affecting his breathing and requires Robert to be on a ventilator full time until the doctors can determine how to address his situation. Last weekend he was transported from Virginia back to New York, and he is currently in the ICU unit at Cohens Children’s Hospital. Unfortunately, the tumor is inoperable because of its location on the brain stem, which is where all bodily functions, both voluntary and involuntary, are controlled.
Although they can’t operate on the tumor because of its location, A specifically guided biopsy is going to be done to see if there are any weaknesses in the tumor that they can exploit with medications. This guided biopsy is an extremely critical procedure that requires Robert to have a pacemaker attached to his heart because the procedure will affect his heart rhythm and will cause him to suffer some form of paralysis as a result of the procedure, that hopefully will be temporary.
This 2 ½ year nightmare has taken an emotional and huge financial toll on this family. Insurance coverages were limited during this ordeal which resulted in the family amassing massive medical bills and well as massive debt to try to get their son the best care possible.
This go fund me was created to help this family through this indescribable ordeal financially. Any support you can show them will go a long way as they have exhausted all their resources and are currently not working to deal with their son’s condition.
Robert had his biopsy, and the results are unfortunately not good. It turns out that he has an extremely very rare condition called Alexander’s Disease which is a terminal disorder that affects his nervous system. Unfortunately, there is no treatment for this condition past treating symptoms and keeping Robert comfortable. This is a heartbreaking diagnosis, and if you could keep Robert & his Family in your prayers, they would appreciate it.
Robert’s story:
For the past 2 ½ years, his parents were told that 11-year-old Robert had a psychological eating disorder. He has been on medication, through therapy after therapy, been made to force himself to eat, has endured countless feeding tubes to nourish his body, and has been tormented by the lack of desire to eat. All the while Robert maintained, vigilantly, that there was something wrong with him and that his condition was not psychological, only to have his claims refuted by a myriad of doctors. His ongoing ordeal has been a constant torment for this family, that’s breaking his parent’s heart. As a last chance intervention, Robert was admitted to a specialized hospital for eating disorders in Virginia for help.
While away, he became ill, confused, and suffered severe respiratory distress. He was transferred from his facility in Virginia to Virginia Children’s Hospital in Richmond Virginia. Robert was suffering from pneumococcal pneumonia, and he placed on a ventilator. While the family was there with him, they explained his 2 ½ year ordeal to the doctors. They decided to a ct-scan, and they were shocked to see that the ct-scan had revealed a tumor on his brain stem that inhibits the ability to swallow. This news was even more heartbreaking for the parents because it turns out that Robert was right all along, and suffering from nobody taking him seriously.
The tumor grew to the point that it’s affecting his breathing and requires Robert to be on a ventilator full time until the doctors can determine how to address his situation. Last weekend he was transported from Virginia back to New York, and he is currently in the ICU unit at Cohens Children’s Hospital. Unfortunately, the tumor is inoperable because of its location on the brain stem, which is where all bodily functions, both voluntary and involuntary, are controlled.
Although they can’t operate on the tumor because of its location, A specifically guided biopsy is going to be done to see if there are any weaknesses in the tumor that they can exploit with medications. This guided biopsy is an extremely critical procedure that requires Robert to have a pacemaker attached to his heart because the procedure will affect his heart rhythm and will cause him to suffer some form of paralysis as a result of the procedure, that hopefully will be temporary.
This 2 ½ year nightmare has taken an emotional and huge financial toll on this family. Insurance coverages were limited during this ordeal which resulted in the family amassing massive medical bills and well as massive debt to try to get their son the best care possible.
This go fund me was created to help this family through this indescribable ordeal financially. Any support you can show them will go a long way as they have exhausted all their resources and are currently not working to deal with their son’s condition.
Organizer and beneficiary
Roberta Amato
Beneficiary