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Does anyone have any experience with obtaining insurance to go to a leg lengthening center of choice or to Baltimore? Our insurance is an HMO and they will not let us go out of network or out of state(Dr. Paley). We have exhausted all options with trying to find different insurance, but since it is a preexisting condition we are having no luck. We may have to resort to my husband finding a different job, but with the economy the way it is we only want that as a last resort. Just wondering if anyone has any suggestions? Thank you.


You mentioned Dr. Paley. The Sinai Hospital website has a page about Financial Policies. On it, it mentions that Financial Assistance may be available to those who need it. I would call the Hospital and see if they can help you out at all. (I'm sorry that I don't have the link to the webpage. I'm going off of a print-out that I made a month or so ago.)

Also, there may be organizations that could provide financial assistance. For example: “The Kelly Anne Dolan Memorial Fund” [[]]. According to the website, “The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.” This specific organization is only able to help those who live in Delaware, New Jersey, and Pennsylvania. If you contact them, they might be able to find other resources to help you. ... FYI. For those of you in DE, NJ, or PA who may be interested in using this organization, I don’t know if PFFD meets their definition of seriously disabled. I plan on contacting them to find out, but I haven’t done so yet.


Children with PFFD are eligible to receive assistance through the Kelly Anne Dolan Memorial Fund. They helped us pay for Olivia's prosthesis.


Is your primary care physician prevented from writing you a referral to a doctor out of network? Sometimes you can get an out-of-network referral for reasons that the "contracting health care providers are unavailable to meet the health needs of the insured." E.g. do not offer that particular service or cannot offer it in a timely manner.