Saving Madilynn

We’re so incredibly blessed to have Madilynn in our lives! We struggled with fertility for years before finally welcoming our beautiful baby girl in August 2017! She truly is the center of our world! January 2019 started out normal enough, we all developed colds.  Madilynn was diagnosed with RSV, like most kids over the winter. The next day she had a seizure and I rushed her to the the hospital! They transferred us to WVU Children’s Hospital and was discharged 2 days later, on a Thursday. By Saturday she wasn’t herself, her balance was off, very irritable, lethargic, so we took her back to WVU. They took a chest X-ray, said it was clear and sent us home. I knew something was wrong, that mother’s intuition is definitely a real thing! We went to UHC and was again transferred to WVU. After several tests, we were told it was more that likely ADEM. TJ not convinced because all of the symptoms didn’t match, continued to ask them to test her for Anti-MOG. They refused for over 2 weeks, until a new neurologist decided to do it. By the time we got the results, we were at Nationwide Children’s Hospital in Columbus. She did in fact have Anti-MOG! They started treatment right away, but she had many road blocks...Pneumatosis, kidney stones! Then we learned about her spinal fractures! They did a bone scan and found several new breaks...right tibia, right wrist, left foot! How does this happen what she’s been in the hospital for over 2 months, we’re still waiting for an answer! I cannot explain how upset we are over all of this! We are now at Children’s Hospital of Philadelphia where they specialize in ADEM and Anti-MOG. Please pray for Madilynn! We just want our baby back! We have insurance but we know it’s not covering everything! And without me working, it puts a strain on TJ who is working 7 days a week! Any donation would be helpful! It’d go toward travel so TJ is able to visit more,  getting the house ready when Madilynn is finally able to come home, medical bills and anything else Madilynn might need during this horrific experience. She can no longer talk, walk, sit up, she’s going to need lots of rehab! But we know our little sassy pants can beat this! She’s a little spitfire for good reason!