Over the course of the past couple of weeks I have come to know two wonderful women - Abigail Sandler and Sue Hoag Badeau. These two women have worked tirelessly on a much needed piece of Pennsylvania legislation called Aimee's Bulletin.
Abby's sister, Aimee, was profoundly developmentally and physically disabled. As a result of horrific, detailed circumstances that surrounded Aimee's Group Home care, Abby with others formed Aimee's Team. For the past four years she has worked towards enhancing the end-of-life decision making process for special needs individuals in Pennsylvania. She refers to the document as Aimee's Bulletin, and it will effect literally thousands of special needs individuals, state-wide. This Bulletin provides a clear policy, with guidance and steps that are morally, medically and legally sound to ensure that end-of-life care can reflect the needs, desires, values and beliefs of the individual and their family members. Harrisburg has promised that the Bulletin will be signed by January 15, 2011.
Wayne Badeau is one of the youngest of Hector and Sue Badeau's 22 children, adopted from all over the world with a variety of life circumstances and challenges. Wayne, one of three terminally ill children adopted by the Badeaus, is delightful and charming with a beautiful smile and engaging spirit. He is also dying. Wayne has a rare terminal illness called San Felipo Syndrome, and while he has already out-lived the medically-expected life-span for this disease, he has definitely declined and it won't be long before he is facing his final days. The Badeaus have already experienced the deaths of their sons Adam (11 years ago this week) and Dylan ( just 3 months ago) and they know how deeply moving, and at the same time painful, it is to experience the death of a child. Wayne is much beloved and adored by his parents, all his siblings and others and we all hope and pray that his final days, when they do begin, will be spent surrounded by family with hugs, love and peace. Yet, because of what they experienced near the end of their son Dylan's life just this past September, they are fearful this may not be the case.
Aimee's Bulletin must be signed. Abby and Sue are working to ensure that it will be signed and Sue and her husband Hector are waiting for the go ahead to take their son Wayne to Harrisburg for the signing.
For more information see: http://badeaufamily.webs.com/