Thank you for visiting my Team Fundraising page to support the "Stepping Out to Cure Scleroderma" event!
Our girl's story goes back long before her actual diagnosis. I am sure that is so true for many people who are in the same boat. When Isabella was about 3 and half, her eye started crossing out of nowhere. At the time, they did an MRI, told us it was not neurological, but that she had a weak eye muscle. It corrected itself within a few weeks, and was monitored through the years. It never really settled well with us that there was never an answer as to why it happened. Within months we noticed an indent on the top of her head and on her forehead. For years, we asked her doctors to look at it and tried to get answers. Often it was a shoulder shrug, and no one really took it seriously at all.
6 years later at her well visit, Dr. Moses really listened to me as I expressed my concern about this spot and that had in fact had changed in appearances. He recognized what she had and sent us to a dermatologist. Dr. Goldfarb was amazing, but told us that we needed to see Dr. Shwayder as he is the "expert" on her very rare form of scleroderma. Words cannot express how grateful we are to have been connected with Dr. Shwayder who just so happens to practice in Michigan! They took her in for an appointment the next day (on a Thursday), and by Friday she had started her medication.
On January 9, 2020 we got her diagnosis, linear scleroderma en coup de sabre. It is a mouthful to say, and a whole lot more to take in. I was terrified, overwhelmed, heartbroken, and everything else in the beginning... and all of that led to fierce determination. After 6 long years of no answers and this unsettling feeling, I knew I had to learn to be pushy and fight for what is best for Isabella and her treatment. Luckily, we have also been able to make several visits to Dr. Torok, a rheumatologist in Pittsburgh, where we are also enrolled in their research study. Dr. Torok also specializes in Isabella's rare form of this disease. Both of these doctors have been fantastic, responsive and attentive to her as an individual patient.
My Isabella amazes me through it all. She has always been my sunshine, smiling through it all. She has been through so many pokes, hours of infusions, light treatments, pills, and more pills, appointment after appointment, specialist after specialist.... No matter what, she finds the positive in it all. My hope for her is that she can take what she has been through and help others learn.
One small thing we can do now is to raise money to support the National Scleroderma Foundation in hopes of someday finding a cure. We hope that you will help support this cause that has become so near and dear to our hearts.
Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to support my team’s effort to raise funds for people living with scleroderma. To make a donation, click on one of the team members to make a gift towards their fundraising effort to help our team.
If you would like to join our team and help raise funds, please click on “Join My Team” and follow the directions.
Please help today! Our team sincerely appreciates your support, and we ask you to please share this with anyone who you think might want to help.
Help our team bring more awareness to scleroderma so we can find a cure!