May 23, 2012
Question from Waterford, Michigan USA:
Our son was born in February 1977 in Pontiac, Michigan. We then went to Children’s Hospital in Detroit then to the Mayo Clinic in Minnesota. We were told that he had no pancreas, that he was the only person in the world to have been born and living for even a year. At a young age, he had many reactions. Our son is pretty smart, good looking, in good shape and just got married. We’re wondering why the medical community, which said our son is an every day miracle, seems to have dropped the ball. He has never received any aid. It’s been very expensive to keep him alive and it has been worth it. They told us time after time he would not live to be seven, then nine, then, for sure, 12. Well, God seems to want him here for a while. Is there any place he can go for financial help, questions about how his body is holding out? If he has a child, will the child be affected in anyway? And, has his brain been affected by those reactions? We love our son. Is there anything we can do to encourage and help him. His present endocrinologist seems to be relatively clueless.
I am not quite clear as to the exact diagnosis. Is it really a total pancreas absence or pancreatic hypoplasia or aplasia or only congenital diabetes which would involve islet cell damage and not digestive enzyme damage? If he had neonatal diabetes, that is a different matter as well and some monogenic diabetes treatment can be changed quite dramatically if this diagnosis can be established with current genetic testing. So, there is not quite enough information from your brief question to be able to answer. If you are not getting answers to such questions from your current medical team, then you should consider seeking other opinions, of course. If he needs financial assistance, then it would depend upon what insurance coverage he currently has, whether or not he is working, whether he would qualify for disability coverage, social security coverage, etc. If you can supply some more details, I would be glad to try to answer in more specifics.