Steve's Stem Cell Transplant

Hi all! I am writing to you today with someone who is very special to me, and many others, on my heart and in my mind. About two years ago, my family was changed forever when my step dad Stephen Sullivan was diagnosed with a rare autoimmune disorder known as Systemic Scleroderma (SS). Literally translated, scleroderma means “hard skin”, and is characterized by the buildup of scar tissue (collagen) in the skin and other organs. In the case of Systemic Scleroderma (the most severe form of scleroderma), the hardening of the skin is so debilitating that effected individuals suffer from disabilities associated with decreasing mobility in their fingers, hands, and often become confined to a wheelchair. SS carries the highest risk of fatality among connective tissue diseases and has previously been considered incurable.

However, in recent years, an experimental treatment with the potential to to not just slow SS disease progression, but actually reverse it, has become available to qualifying patients. Such treatment consists of a stem cell transplant, which involves extracting stem cells from the patient’s blood/ bone marrow, administering multiple sessions of high-dose chemotherapy or radiation therapy to destroy existing blood-forming cells, and then returning those stem cells to the patient’s blood in order to form healthy new stem cells. The results have been nothing short of miraculous, and have given our family hope that Steve will have the opportunity to live a long and happy life.

While our whole family has come together to support Steve, the large majority of responsibility has fallen on my mother, Erin, who has fought tirelessly to get him this treatment. When we received news that the insurance company refused to approve Steve’s stem cell transplant, she filed an immediate appeal, spent countless hours on the phone, never took “no” for an answer, and even went as far as getting state representatives involved— all the while caring for Steve at home, working to support two college tuitions, and making sure all four of her children have everything we need. Thanks to her efforts, our appeal was granted and Steve will be headed to Northwestern to receive his stem cell treatment starting in late September! Unfortunately, insurance only covers expenses related to the procedure itself, which means that any expenses related to travel (including Steve’s airfare, as well as airfare for my mom to be able to split her time between Boston and Chicago), as well as accommodation, will need to be covered out of pocket. Due to the fact that Steve has been unable to work for some time now, my mother is currently the only earning member of our family. Even though I know she will find a way to take on this financial responsibility on top of everything else she has on her plate already, and will do so whist staying strong for everyone around her, and never asking for help from anyone, I am reaching out to you all today so that maybe she won’t have to. Every donation, no matter how small, will help to lighten the load that she is carrying, and allow her to focus more of her energy on supporting Steve throughout every step of this journey.

The most important reason, however, that I am reaching out to you all today is to simply ask for help in supporting an incredible person. Steve is a husband, friend, younger brother, uncle, great uncle, and a very important father figure to me and my siblings. He deserves this second chance at life more than anyone, and I’m hoping that by raising funds we lift can his spirits and show him just how many people are routing for his recovery.

In the case that any extra funds are raised which are not needed to cover expenses directly relating to Steve’s treatment, I will be donating them to the the Scleroderma Foundation, in order to help fund future scleroderma research, support, and education.


Thank you for your consideration,

— Annie