I who was born June 17, 1988 with several birth defects that affected the mid-line of my body known as VACTER syndrome. Each letter represents a different part of the anatomy and of the five letters, I have four of the anomalies.
In my early years of life, I had four bowel surgeries, tracheal surgery, four open heart surgeries, and over 10 other heart related procedures.
August 29, 2019
I have now been listed for my heart/liver transplant for one month! We anticipate the wait to be at least several months to a year or more; however, I’m doing pretty good. The fluid problems I experienced early in the year have been resolved and I have been doing a great job watching my sodium and fluid intake and the fluid has not returned. Even my blood work has gotten slightly better which just makes me feel better! I have been working full time and plan on teaching again this year at Beth Shalom. God willing, I will be fairly healthy until I receive my new heart and liver. I know it can be confusing that I am doing ok but still need the transplants. Although I look pretty good and feel pretty good, my lymph system is not able to handle the processing of all of the fluid in my body and it is all due to my heart condition and a terrible complication called PLE. PLE is something that I have battled since I was 7 years old. Everything that can be done to help me manage the PLE has been done and the only option now is the transplants so that I can live a healthy life. We are doing a bunch of fund raisers in the month of September and hope that you will consider supporting me.
July 26, 2019
Today, Ross found out he is officially listed for both the heart and liver transplant. It has been a very long 7 month process going through meetings, testing, more meetings, more testing, more meetings, more testing, insurance verification and final blood work to get to this point. Now we have to be patient and wait for “the phone call” to come to the hospital. There is a chance we get to the hospital and we are sent home but we’ve decided on a plan where we will go to 4th Street Deli and Ross can eat whatever he wants. He is very limited on his salt and fluid intake but I think the deli is a good option since it will be really disappointing. You know how Ross loves deli and enjoys laughing! I know the day will come that we will get “the real call” and a new journey for Ross and all of us will begin. We have to keep breathing and praying and Ross needs to work hard to stay well through this wait. Thank you to everyone who has been following up with us and helping us with fundraising and general support. We will need it more now than ever! Love, Donna and Ross
Photo Galleries (1)
December 3, 2019
Let's get this done!!
October 18, 2019
Sending prayers and good wishes your way! Linda & Steve Anguish
October 17, 2019
Ross, You've been inscribed in the Book of Life for another year (and many more). Aunt Marsha and Uncle Walter (Ciccolo)
October 14, 2019
Hi Ross, I'm a friend of your Aunt Cindy's and have followed your health journey fsince you were a child. I'm sending you love and light for a successful transplant! Everything is in Divine Order! Blessings, Gailann