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I know that I have a friend here whose son was born with short bowel syndrome. He had to have a liver tx before a year old because the TPN ruined his liver. The baby's grandfather had obtained the Gerber Grow-Up Life Insurance on all three of his grandchildren. When they found out had a liver tx (after he was on the policy), they dropped him and sent the grandfather the money back he'd paid on it. He turned around and put it in a savings account and adds the same amount he pays for the other kids' policies into that account, just so has something to help with costs in case she does lose at some point. (There's still a chance he'll have to have a small bowel tx in the future.) AmiGAIATREK wrote: Hi Jeannie,I wish you a warm welcome to the group. Yup, there are lots of great peoplehere and a ton of information shared daily. It's a bummer diagnosis but ifyou have to have it, this is the place to be. Don't count on lifeinsurance. My son was dx'd (PSC) at 9 years old (and Crohn's 2006) and isnow 13. We've never been able to get Life Ins on him either. We have arider on our policy that will cover him for $10,000 that we got on each ofour kids when they were born. It seems that's all they're ever going toget. My boys all have bipolar disorder as well and the Life Ins companieswon't cover people with mental health issues either.

I'm not positive but Ithink most mortgage insurance policies are really just life ins policiestweaked to cover the mortgage. It can't hurt to shop around but I wouldn'tget your hopes up. If you find something, please share with the group. Mom to (13), dx'd PSC 1999 and Crohn's 2006 When I call about insurance they always ask the dreaded question about Liver Disease. You can just hear them sigh when I say yes. So far everyone I have talked to won't even cover him. Any thoughts or suggestions on what we should try or someone we should contact. Thank you all for everything you contribute to this group. I haven't been a member for long, but in the few weeks I have been lurking, I have learned so much and already feel very "at home' with you all. Thanks for the support!The Denney's in SWOhio

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I know that I have a friend here whose son was born with short bowel syndrome. He had to have a liver tx before a year old because the TPN ruined his liver. The baby's grandfather had obtained the Gerber Grow-Up Life Insurance on all three of his grandchildren. When they found out had a liver tx (after he was on the policy), they dropped him and sent the grandfather the money back he'd paid on it. He turned around and put it in a savings account and adds the same amount he pays for the other kids' policies into that account, just so has something to help with costs in case she does lose at some point. (There's still a chance he'll have to have a small bowel tx in the future.) AmiGAIATREK wrote: Hi Jeannie,I wish you a warm welcome to the group. Yup, there are lots of great peoplehere and a ton of information shared daily. It's a bummer diagnosis but ifyou have to have it, this is the place to be. Don't count on lifeinsurance. My son was dx'd (PSC) at 9 years old (and Crohn's 2006) and isnow 13. We've never been able to get Life Ins on him either. We have arider on our policy that will cover him for $10,000 that we got on each ofour kids when they were born. It seems that's all they're ever going toget. My boys all have bipolar disorder as well and the Life Ins companieswon't cover people with mental health issues either.

I'm not positive but Ithink most mortgage insurance policies are really just life ins policiestweaked to cover the mortgage. It can't hurt to shop around but I wouldn'tget your hopes up. If you find something, please share with the group. Mom to (13), dx'd PSC 1999 and Crohn's 2006 When I call about insurance they always ask the dreaded question about Liver Disease. You can just hear them sigh when I say yes. So far everyone I have talked to won't even cover him. Any thoughts or suggestions on what we should try or someone we should contact. Thank you all for everything you contribute to this group. I haven't been a member for long, but in the few weeks I have been lurking, I have learned so much and already feel very "at home' with you all. Thanks for the support!The Denney's in SWOhio

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I know that I have a friend here whose son was born with short bowel syndrome. He had to have a liver tx before a year old because the TPN ruined his liver. The baby's grandfather had obtained the Gerber Grow-Up Life Insurance on all three of his grandchildren. When they found out had a liver tx (after he was on the policy), they dropped him and sent the grandfather the money back he'd paid on it. He turned around and put it in a savings account and adds the same amount he pays for the other kids' policies into that account, just so has something to help with costs in case she does lose at some point. (There's still a chance he'll have to have a small bowel tx in the future.) AmiGAIATREK wrote: Hi Jeannie,I wish you a warm welcome to the group. Yup, there are lots of great peoplehere and a ton of information shared daily. It's a bummer diagnosis but ifyou have to have it, this is the place to be. Don't count on lifeinsurance. My son was dx'd (PSC) at 9 years old (and Crohn's 2006) and isnow 13. We've never been able to get Life Ins on him either. We have arider on our policy that will cover him for $10,000 that we got on each ofour kids when they were born. It seems that's all they're ever going toget. My boys all have bipolar disorder as well and the Life Ins companieswon't cover people with mental health issues either.

I'm not positive but Ithink most mortgage insurance policies are really just life ins policiestweaked to cover the mortgage. It can't hurt to shop around but I wouldn'tget your hopes up. If you find something, please share with the group. Mom to (13), dx'd PSC 1999 and Crohn's 2006 When I call about insurance they always ask the dreaded question about Liver Disease. You can just hear them sigh when I say yes. So far everyone I have talked to won't even cover him. Any thoughts or suggestions on what we should try or someone we should contact. Thank you all for everything you contribute to this group. I haven't been a member for long, but in the few weeks I have been lurking, I have learned so much and already feel very "at home' with you all. Thanks for the support!The Denney's in SWOhio

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  • 3 years later...
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I may be able to help you. We have Life insurance set up for our ASD son. He does not have seizures but was born premature with a grade 3 IVH. If the child is young enough they do not even ask medical questions. We also have insurance for ourselves set up in a trust. My husband works for Mass Mutual and although he is their IT specialist he knows alot of good people who do sales. There is a specific department at the Ft. Laud branch that does special needs planning. The gentleman who runs it is awesome. If you want his info you can email me directly at knm22leo@...

Kim

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