I’ll start by saying exposing my daughter’s most difficult and vulnerable moments isn’t easy, but if it can help another family, then I’m all for sharing Sofia’s Story.

This reel says plenty about Sofia’s journey. But it doesn’t detail her grueling misdiagnosis from December through March or the neglect experienced after finally being diagnosed with ITP. Our family’s lives changed drastically a few weeks after my twin daughters caught the RSV virus on their second birthday after a trip upstate New York. Weeks later, Sofia's health steadily plummeted. The blood in her diapers, pale skin, irritability and terrible stomach pain started and exponentially got worse for nearly four months. Numerous specialist appointments took place where her bloody diapers were tested, but not her blood. Her internal bleeding was falsely deemed to be caused by the C-Diff bacteria, which is naturally present in babies up to around two-years old. How could the Doctors overlook this…? Especially after rounds of THREE different antibiotics didn’t help her symptoms.

Sofia was first admitted to the hospital early March because she was very weak and suddenly unable to walk. Her abnormal bloodwork, anemia, bruises, and low platelets were overlooked,and she was sent home, still barely able to walk and looking the worst yet. She became critical two weeks later. It was then that doctors finally figured her out after days and nights of torturous tests. Immune Thrombocytopenic Purpura, or ITP, is a rare autoimmune blood disorder that attacks blood platelets. It can develop shortly after a viral infection and is usually caused when the immune system is overwhelmed, short circuits and turns on itself. It was severely thin blood causing her internal bleeding. ITP can cause fatal spontaneous brain bleeds or even just a bump to her head could have ended her life. We are so grateful she made it through all this turmoil, but our family still suffered. I put my career on hold to invest everything I had to be her advocate. ITP is a scary, turbulent and unpredictable disorder. This easily could have been tragic and that is why I’m bringing awareness.

After treatments didn’t work, she was given strong steroids for months even though I pleaded for a better way. Everything changed when I switched hospitals. Cohens Childrens Hospital heard Sofia’s story and accepted her immediately. They promptly changed her treatment and within three weeks Sofia started to thrive again! I still visualize and pray that Sofia will permanently go into remission. Maybe even before her upcoming third birthday ✨🤗. Anything is possible.

In the meantime, it feels wonderful to transform this year's challenges into something great! Please help support PDSA by donating to this extraordinary organization that helps with ITP across the globe in every arena the disorder effects 💜.