While her PRP journey has ended, Tierney Ratti’s family has created a Memorial Fund to help pay for her “end-of-life transition and fulfill her final wishes”. Charlie has asked me to post the following here – to the PRP Facebook community she loved.
From the Ratti Family
Tierney Sue Lynch Ratti, my devoted wife and mother to Alex and Sam, healing counselor to dozens of sufferers of pityriasis rubra pilaris (PRP) and life’s little challenges, has passed away and her suffering is finally over.
Though Tierney managed her PRP exceedingly well through her early years and middle age, she suffered horribly from PRP and related health consequences for the last five years. The disease has been almost as devastating to our family and finances as it was to her body, and we find ourselves needing help to pay for her end-of-life transition and fulfill her final wishes.
We aren’t sure of all the costs yet, but they may include expenses for her hospice care and friend/family visitations, fulfilling her wishes to donate her body to science (e.g. anatomical donations, genetic tests), her Celebration of Life and possibly legal expenses.
While some costs may be covered by state programs and full costs will be uncertain for some time, we can tell these expenses will be significant and possibly in the range of $10-20K. Any help that can offered will be greatly appreciated. Any funds we collect beyond the goal will be donated to further research into PRP.
Tierney was incredibly generous with her love and counsel not only to her family and friends, but also to all that suffer from PRP and associated conditions around the world.
Her relentless generosity throughout her life, drove her to help others at every opportunity. She became the Administrator of the PRP Facebook Support Group and was tireless in her efforts to develop the PRP Survival Guide and expand the PRP Global Database. The impact of her generosity will not end with her passing.
Tierney made it clear to me and our kids, that to whatever extent possible, she wants to donate her body to medicine and particularly to research into PRP and other rare diseases. It is proving to be a very challenging process getting Tierney to the right places (e.g. Thomas Jefferson University, Sydney Mellon Medical College, Department of Dermatology and Cutaneous Biology and Eastern Virginia Medical School, Medical College of Virginia). We want to make sure we fulfill her wishes as best we’re able and honor her memory the best we know how.
Thank God for Alex and the skills and knowledge he has developed, as they are perfect to navigate the red tape associated with getting the most out of Tierney’s gifts.
Thank God for Samantha and her nurturing heart, for being with my wife for her last goodbye. Sam you’re a beautiful soul!
We can’t fully express how much the PRP global community meant to her and our family, but THANK YOU ALL for your love and support for Tierney throughout her life. THANK YOU ALL for the kind words and stories over the past few weeks. And THANK YOU ALL for anything you can contribute to help her one last time.
To access GoFundMe go to:https://www.gofundme.com/f/tierney039s-memorial-fund