disabled child denied medical treatment

Our son, pictured in the red bib, is a 17 year old with multiple handicaps, who suffers from dysautonomia. To date, 41 hospitals, including Albany, GoLisano Childrens,RMMH,St Elizabeths, Rush Med Center, BMCH, UTMC, and Vanderbilt Med Center, have turned us down, most saying that they are not "credentialed" to care for patients with this many conditions. We are Desperate to find medical care for our child, before this condition shortens or claims his life. We need help...desperately....and by posting this, I am praying that someone will be able to help him..and us! Our son has fragile x syndrome, is non verbal, has chronic OCD ,acute anxiety disorder, partial/complex seizures, poor circulation, POTS,and fine/gross motor delay. He cannot walk talk bathe feed or dress himself since contracting dysautonomia...when we stand him for any length of time, his hands turn grey,and his feet purple...we are truly desperate to find a doctor willing to take our child's case.

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Chrevan77 says ... on Monday, May 16 at 3:11 AM

do anything...anything to help them, to get them help..and you would expect that a doctor would treat that child. In our case, to date 42 hospitals have turned us away..we need help for our son DESPERATELY! Please help us help our child!!!

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Chrevan77 says ... on Monday, May 16 at 3:09 AM

with no luck! While they have not come out and said so, we feel the answer "we are not credentialed to care for him" is just their way of saying, we don't want to deal with all his issues! If your child had an illness that could kill him..you would

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Chrevan77 says ... on Monday, May 16 at 3:08 AM

people with handicapped family members ,read this and take note...this could happen to you too! We have been searching ,writing letters and emails now for over a year..all have turned us away! we have called many disabled persons organizations

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Chrevan77 says ... on Friday, May 13 at 8:21 PM

No, we have not contacted them yet...I will give them a call ...thank you for caring enough to comment :) We have a social worker thru HARC, who also has been trying to help us find our son help...so far, no one is willing to help him.We keep trying

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MICHAELPOLAK says ... on Friday, May 13 at 5:29 PM

Hello. I don't know if you have spoken to the NYS Office for Persons with Developmental Disabilities or not, but they may be able to help. Here is the phone number for the Central NY Developmental Services Office located in Rome. 315-336-2300

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