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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.

Updates (11)

September 14, 2020

The two pictures I just added was one of Ross, Glenn and Skyler the night Ross was taken down to the OR for his organs. Skyler who is also waiting for a heart/liver is to the left and Glenn is to the right of Ross. The 2nd picture is of Ross with what he called his “porn stash”. I trimmed his beard but didn’t do a good job at all. There was just a few holes here and there, so he shaved on the beard and kept the stash!

September 14, 2020

The last 6 days have been a rollercoaster of emotions. On Monday, September 7th the doctors told Ross they have organs for him but they wouldn’t be operating until Tuesday, September 8th around 5 pm. That became 6 pm and then 7:15 by the time they finally took Ross down to the OR. We got the “go” at about 9:30 pm. Surgery lasted 19 hours which was excruciatingly long and only got updates every 2 – 3 hours. There was a lot of scarring that had to be dealt with from previous heart surgeries, packemaker surgery and bowel surgeries in addition to a lot of bleeding. I finally got to see my boy at 6:00 pm on Wednesday, September 9th. So amazing that he has a new heart and liver and got them on what would have been my mom’s 90th birthday and you know she was watching out for him and making sure he was ok. They were not able to close his chest, and as expected they did not finish his liver connections. It was pretty creepy but then cool to be able to see his new heart beating! For the past week, he has been heavily sedated, on a breathing tube, waiting for bleeding to slow down/stop, which it has; along with getting him off of many blood pressure medications. They have to wean him slowly and he is making good progress. Each day they say that they will go in and close his chest in the next day or two but it still hasn’t happened. His neuro exams are very positive and today, he squeezed my hand and opened his eyes and looked at me and shook his head “no” when he was asked if he was in pain. He has a low grade fever that started last night and they are giving him antibiotics. The hope is they will take him down to the OR tonight and complete his liver connections and god willing, close his chest. There are no words to express how much everyone’s love and support has meant to us. People are praying around the world for Ross and I know it has made a difference and can feel everyone’s love around both of us. Please continue to pray for Ross as he continues this unbelievable journey. He has such a strong spirit and has shown so much strength and perseverance over the last 10 days. I can’t wait for him to talk to me and ask what happened as he’ll have no memory and all he’ll want to know is when he can eat…that’s my Rossiroo! We will keep everyone updated through this site and through Facebook at #TeamRossiRoo. Thanks to Jennifer Michaels for doing such a great job with the updates. I also want everyone to pray for two more families. The first family is of the donor who gave Ross such an amazing gift of life. The second set of prayers need to go out to Glenn Barnard and his family. Glenn also received organs a couple of days after Ross here at UCLA and he has been struggling. Both Ross and Glenn are amazingly strong and have been through so much in their life. I know they both will continue to fight to live their best life but it has been really hard for me and I know for Glenn’s parents and wife.

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Guestbook

September 13, 2020

All the best in your recovery Ross.

Mathies Jensen

September 11, 2020

i am hoping and praying for a full recovery for ross and healthy life going forward. i have known donna since elementary school and she is a wonderful person. i hate to see her have to go thru this but i have a very good feeling that ross will pull thru and have good health and that sometime soon they will celebrate together.

paul schwartz

September 5, 2020

We met at the VACTERL conference last summer. Best of luck to you!

Connie Morrisroe

August 31, 2020

Dear Ross, You have been my hero since day one when your bright light filled up Children’s Hospital in Philadelphia. You have endured so much with positivity and humor. From the moment I met you, saw your big smile, heard your giggles, and held your little hands; you inspired me and I fell in love with you! These transplants will give you the opportunity to finally enjoy your life and achieve what your heart desires. Everyone who truly knows you realizes what an amazing person you are. A man who is kind, caring, humorous, compassionate, and very creative while having so much courage. As your aunt, knowing you so well and spending time with you has made me a better person. I am so thankful for you, Ross. The best is yet to be! I love you and want the best possible future for you!!! Your loving committed mom has always been your partner, made you the biggest priority in her life via much sacrificing, was and still is your medical advocate and so much more. With her support you know that she will always “have your back” which will help you heal through your surgeries. Love, Aunt Cindy (maternal aunt) XXXXXOOOO

Cindy Shapiro