As we learn more about Sadie's condition, we also learn more about our needs as parents as we navigate this new reality. So, as a continuation of our "If there's anything..." post, we decided to add a few more things to the list.
6) Advocate. We were disappointed to learn that Illinois ranks dead last in many services to individuals with disabilities. Read more about that here. (For example, Sadie is currently on a wait list of 20,000 people to get any sort of assistance for her disability.) Send a letter or e-mail to your Illinois representative about providing more programs and services for individuals with disabilities.
7) Give to Sadie's Special Needs Trust. We've set up a special trust for Sadie to pay for items that are not covered by insurance. (i.e. therapies, medications, special equipment, etc.) The trust ensures that any funds set aside to care for Sadie will not be counted against her once she turns 18, and will enable her to access public funds such as Medicaid and Social Security Income. It also will provide for Sadie's care if, heaven forbid, anything were to happen to Adin or myself. If you'd like to make a donation to Sadie's Special Needs Trust, please let us know. You can also donate with a credit card through PayPal (simply click the link on the right).
8) Attend a benefit fundraiser for Sadie and the Aicardi Syndrome Foundation. We are blessed to have great friends who are planning a fundraiser next week in South Bend, IN. It will be a fun party with great music :) Click here for more info. We hope to see many of you there.