Rare Ronnie-Battling MT8 , Fighting 4 Her Future.

Meet Ronnie, a bubbly, curious, strong-willed and caring young 4-year old with a zest for life who loves her family and, admittedly, her snacks!

Ronnie was diagnosed with acquired Mosaic Trisomy 8 (MT8) when she was an infant (a very rare chromosomal disorder with far reaching and critical impacts). There is not a lot known about this disorder and even less research, but some organizations like the National Institute of Health (NIH), are doing some interesting and leading-edge research in the United States.

After years of tests & hospital stays & dealing with complications from unexplained fevers, pain, ulcers and recurring infections/illnesses, Ronnie's latest test results have identified a very troubling, highly overactive immune system and some equally terrifying MRI results showing damaged white matter in her brain. Basically her body is attacking itself, killing healthy cells and putting her at very high risk for critical complications. The fight is on.

Although North Bay is their home and happy place, Ronnie and her Mom, Dad and Brother (Missy, Keith, Ollie) will be spending a lot of time outside of North Bay seeking the best possible care as the Drs at CHEO & Sick Kids work to assemble a specialist team & the best treatment plan. We also just got exciting confirmation that Ronnie has been accepted to participate in an important research study on MT8 and autoimmune disorders being led by the NIH out of Maryland, US. We are bursting with hope!

So many of you have been reaching out and asking how to help. First and foremost, thank you for your love and your best wishes and your genuine concern. There is an unexplainable comfort from this feeling of community and it will carry Ronnie and the family a great distance. We are setting up a GoFundMe to help get Ronnie to the States to participate in a leading edge study. Funds will be used to help with travel/accommodation expenses while Ronnie attends Children's Hospital(s) and to help leave no stone unturned in getting Ronnie the help she needs to fight this rare disorder. Please follow along on Instagram at @RareRonnieNB as we share updates and learnings as Ronnie's unknown journey unfolds. #rareronnie #MT8