The next big step for Evanna is the creation of a Special Needs Trust, which is a legal means that allows a disabled person to accrue funds for a variety of things (medical treatment, equipment, supplemental care, etc) without it counting as income, which could/would jeopardize her insurance coverage and SSI.
Legally, it's a convoluted process that has to be navigated and used carefully, but it's hugely important, and would allow us to do real fundraising for her for equipment not covered, or even the possibility of some of the not-yet-approved-in-the-U.S. treatments using adult stem cells that show huge promise for those with spina bifida.
Fortunately, I've found an attorney locally that is experienced in SNT both professionally and personally (her son is autistic), and her fees are substantially lower than others I've contacted. Still, though, it's money we don't currently have. (And if we did, it would count as an asset, and we'd potentially lose her medical coverage and SSI...see the issue with the way 'safety nets' are set up?)
If there's anything at all we learned this holiday season (and this past year), it's that there are a lot of people who care and want to help.
The link below is a PayPal donation page (can't do a public Gofundme or similar fundraiser until the SNT is established, but PayPal funds can sit without going into any account until it's time to pay the attorney.) Any help is greatly appreciated!
