Christy McCaffrey not only lost her mother to an autoimmune disorder, but a cherished friend with whom she was very close to.
But since Sandy Selfridge's death at age 58 her daughter founded Project Scleroderma, an organization to "bring awareness to this urgent need for a cure."
Now the 27-year-old Havertown woman is racing against time to raise $30,000 by Monday, May 28, at 11:59 p.m. to ensure that Project Scleroderma continues to run.
If the goal is not reached, McCaffrey, who works as a hair stylist at Nicholas Sebastian Hair Salon in Newtown Square, said, "If we do not reach this amount by the 28th all of our funders will get their money back."
McCaffrey took the time to discuss with Patch about her mother, Project Scleroderma and her life outside of the project.
Patch: Sadly, Project Scleroderma really started with your mother. What type of woman was she? From the video that I saw it seemed like the two of you were very close. (Editor's note: Some of the images in the video can be considered graphic.)
McCaffrey: Yes my mom and I were very close. She was not only a great mom, but as I got older I also considered her my closest girlfriend as well. I am the youngest of her three children, she was an incredible mother first and foremost and had a great relationship with each of her children. She was passionate about life and helping others, she typically did so under the radar, but was very generous and kind. She had a great sense of humor and was very good at helping others to see the lighter side of life.
Patch: I know this maybe painful, but I think it would really help the readers understand the scope of this. How did your mother find out that she had scleroderma? How did your mother, you and your family cope with the news?
McCaffrey: Initially her symptoms were shortness of breath and swelling in her legs and hands. After a biopsy was taken from the skin in her hand the doctors were able to diagnose these mysterious symptoms as scleroderma. It turns out that not only was the disease affecting her skin, the shortness of breath was due to the scleroderma's presence in her lungs as well. Not one person in my family had ever heard of the disease when she was diagnosed so it was hard to know what to expect.
Doctors told us not to research too much about the disease because every case is different and they could have no way of knowing how this would play out for her. My mom was definitely anxious about the fact that this was something we knew nothing about, but we came together as a family and supported her by remaining positive and optimistic. My mom chose to believe the entire time that she would beat this, her attitude encouraged us all to do the same.
Patch: How long did your mother suffer with scleroderma?
McCaffrey: She was diagnosed in April of 2009 with scleroderma and passed away just a few months later in September of 2009. It turned out the form of scleroderma she had was very aggressive and swift moving. In hindsight I am grateful that she did not truly have to suffer for a long period of time, but it was heart breaking to lose her so quickly to a disease we felt powerless against.
Patch: To help the readers understand better, what exactly is scleroderma? What are some of the symptoms and treatments for scleroderma?
McCaffrey: Scleroderma is a type of autoimmune disorder, which is a condition that occurs when your immune system mistakenly attacks and destroys healthy tissue. It is a group of progressive diseases that involve the hardening and tightening of your skin and connective tissues, which are the fibers that provide the framework and support for your body, along with changes in the skin, blood vessels, muscles and internal organs.
I can't speak about treatments as every case is different and many forms of treatment are used.
Patch: When did you start Project Scleroderma and can you please tell the readers a little about it?
McCaffrey: After my mom's death, I reached out to patients living with the disease in an effort to learn more about scleroderma. In speaking to them I learned that they are desperate to find a cure for their illness; but, with the majority of our population unaware that the disease exists, it is difficult for doctors to procure the funds to conduct the necessary research. Awareness, at this point, is crucial for this cause.
Project Scleroderma is my own personal mission to raise awareness for scleroderma. Along with New Pace Productions, I will be producing a documentary on the disease that will tell the story of my mom's illness and passing and the ways in which it has drastically changed my life. In the film I will be interviewing patients throughout the U.S. as well as several patient's abroad.
My intention is to give these patients an opportunity to share their stories about how they have struggled with scleroderma. Through the telling of my own story of loss and a collection of stories from patients dealing day-to-day with this unknown, terrible disease, my hope is to highlight the importance of scleroderma awareness and to inspire support for scleroderma research.
Patch: From what I’ve seen of the video, this is really a world-wide project. How has it been received so far?
McCaffrey: The global response to this project has been overwhelmingly touching and inspiring to me. I feel as though the patients abroad are the most eager to get involved because there is even less awareness in their countries than there is in the U.S. and that is very little here so you can imagine how helpless they must feel. One patient in particular, from Madrid, Spain, raised funds on her own for this project and just this week donated over $3,500 to the campaign. It is the interaction I have had with these patients, the bonds that we have formed and the incredible support they have given me that is driving me the most to accomplish our common goal.
Patch: You have really been on tour with this project and educating people about scleroderma. What have you learned about yourself and this journey?
McCaffrey: It is difficult to put into words how powerful the lessons have been for me personally thus far in this project. And how grateful I am for what I have learned about myself through this journey. I have learned that I simply cannot ignore what I am passionate about and cannot be afraid to follow my heart.
This process has been challenging at times and at certain points I felt as though it may be too emotional and personal to continue, but the passion I had deep down to make a difference for these patients and to ensure that what happened to my mom does not happen to others was far more powerful than any doubt or obstacle. I chose to continue despite my fears, and am certainly glad I did.
Patch: You have a fund-raising campaign to reach $30,000. How is that going? How will the money be used?
McCaffrey: The fundraising campaign is steadily climbing, we have until Monday May 28th to reach $30,000 and are currently at $22,715. If we do not reach this amount by the 28th all of our funders will get their money back. We chose this type of fundraising because we simply cannot continue production without a minimum of $30,000.
If we meet our fundraising goal, The Scleroderma Research Foundation and director/producer Bob Saget will lend their expertise to help make this video even more powerful for patients and bring awareness to this urgent need for a cure. It is crucial that we reach our goal in the next few days or this project and our collaboration with Bob Saget and The Scleroderma Research Foundation will not be possible.
Patch: Was your mother involved in charity work like this? What do you think she would say about Project Scleroderma?
McCaffrey: As I mentioned earlier, my mother was a very giving and charitable person, but did so under the radar. She supported numerous causes and regularly volunteered her services as a massage therapist at The Children's Hospital of Philadelphia. Honestly, if my mom had survived scleroderma she would most likely not have spearheaded a project like this as I am, it just wasn't her personality. She would have certainly contributed to and supported the cause, but in her own humble way. I do however know with certainty that she would be most proud of the fact that I followed my heart and tried to make a difference.
Patch: When not working on the project, how do you spend your down time?
McCaffrey: I am a hair stylist at Nicholas Sebastian Hair Salon in Newtown Square. I am very passionate about my job as well and love what I do. In my down time I like do anything that allows me to express myself creatively. I always have my hands in several different projects, that is just my nature.
I have incredibly supportive family, friends, employers and co-workers who have helped me along the way in this project, for which I could not be more grateful. Most especially, Jc Costa and Bill Connell of New Pace Productions who have taken on this passion project with me. I am so lucky to have such wonderful people behind me.