Sophia DeMarco Sophia's MALS Journey

First post: Apr 27, 2022 Latest post: Jul 28, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place on Sophia’s MALS journey. We appreciate your support and words of hope and encouragement. Sophia is reading all of these, so it’s a great way to encourage her. We are not fundraising but it is a way of giving information in one place. Mom (Ramona) is writing most of the journals though Sophia is a co author and may write some if she is up to it. 

August 27, 2021 Sophia had her CT scan confirming the anatomy for MALS, Median Arcuate Ligament Syndrome. 

 This came after years (years and years) of us trying to sort out Sophia's medical struggles. These have exacerbated since jr. high but they have been present since birth. She was diagnosed with extreme GERD at the age of 6 weeks and this never resolved. This in itself is mind boggling to me (mom).  Sophia has always had food sensitivities and pain associated with foods. In her teen years the pain got worse. We have gone through so many carousels of doctors and long, complicated circles of misdiagnosis that this site really comes at the tip of the iceberg, and hopefully the turn in the road for Sophia. Life after MALS surgery is often referred to as "Life 2.0" and we are truly ready to embark on that ship. The pain she has is likened to end stage pancreatic cancer. Sophia has gone through the teen years in this pain. It is hard for even her to really put a finger on it --as pain has always been her reality. She didn't know that people eat and don't hurt, so she never really discussed this. 

Once we discovered the reality of what was really going on Dino and I really started researching and making endless phone calls, seeking specialists -- seeking answers. It is hard to simplify this journey but truly the end of the path is all that matters now. The path that will lead to a better quality of life for Sophia. We are thankful to be there. She has really solid goals in healing. She knows the process is long. We are expecting an upcoming year of ups and downs. We are hopeful it will end in total healing. 

We are hopeful for days of eating or drinking where it doesn't take her breath away in pain. Days where we won't find her in the fetal position on the floor for hours. Days where she is able to get out of bed and go about her life. We are hoping her gastroparesis (the word literally means paralyzed stomach) will mend. We are hopeful for so much. 

Sophia is enrolled for fall classes  in Crafton, a community college where she has been dually enrolled and already begun her studies during the pandemic, while in high school. This will allow her to focus on healing, and school, while being at home for the support she will need. She plans to heal completely and then transfer, with her two year degree, into a four year university. 

We appreciate you taking the time to see her journey. We believe in prayer and ask you to continue in prayer. We have a new path and a long way to go still. We are ready. 


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