Rory’s Recovery Journey

Hi my names Chelsea and this fundraiser is for my sweet 7 yr old daughter Rory. Rory is the sweetest, silliest little girl I’ve ever known. She is always making up her own little dances and making the funniest faces in response to questions. She is surrounded by brothers (2 older and 2 younger) and thinks she’s everyone’s little mama. She loves gymnastics and going to school with her friends.

Rory started getting sick mid May and has been off and on sick for over a month now. Neck pain, back pain, joint pain, stomach ache, fevers, chills, nausea, muscle weakness. We took her to the Dr back end of May and they ran all kinds of blood work, respiratory panel, viral panel and everything was normal. She didn’t get better, had good days but most were rough. We made another appointment for Wednesday and they decided she needed to be admitted and since then we’ve been on a wild ride. They have run 3 sets of blood cultures, UA, 4 CTs, 4 MRIs, all kinds of blood work, EEG, 2 heart echos, lumbar puncture, US. On Friday we got moved to the PICU due possible seizure/stroke (stroke was ruled out) and altered mental status. Her MRIs were very severe and she has now been diagnosed with ADEM (Acute disseminated encephalomyelitis) which is pretty rare and the thought is she got it post infection and her infection was just about gone but her body’s antibodies started attacking the myelin around her brain and spinal cord. Both of which were very swollen and had a syrinx on her spine (fluid filled that pushes on spinal cord). Which explains her severe neck and back pain and trouble walking. She is now back in a regular PEDs room and will have to be here at least another 3 days for steroids. She had 2 doses of ivig, multiple antibiotics and she is finally able to say a few words and move all of her extremities, she is not able to walk on her own. PT, OT, and ST will be working with her to get her stronger. We’re not sure what lasting effects will be left behind by this.

We have a long road ahead of us. We are unsure how much this is all going to cost but we know it’s going to be a lot. Anything would help us cover these costs and get us back in our feet after this is all over. Thank you for taking the time to read this and any donations you give! We would also greatly appreciate thoughts and prayers for a full recovery!