Hi there. We are the St Jules, a family of five seeking a simple life in rural Maine. We did not expect to live in Maine, but God has a funny way of bringing you to place that will help cultivate what is needed in you. And what was needed was a way to get back to simple - church, homeschooling, community, and getting outdoors. We practice a healthy lifestyle as to be an example to our three boys. I think we always thought if you exercise and eat well you are in a sense immune to harsh diseases. So when our middle son, Beau was hospitalized at the age of 8, it was hard not to think where we went wrong.

It started three days after his eighth birthday. He mentioned he was seeing some patterns in his eyes. We told him to let us know if it got worse. Three days later Beau’s vision was compromised by colourful dots. It was heartbreaking when I would say ‘I love you’ at night and he would say it back not able to find where my eyes were. The ER staff had us get a MRI and a lumbar puncture. When the results came back they found he had severely swollen optic nerves and lesions on his spine. He immediately was put on high dose steroids to get the swelling down. The neuro doctor suggested to do plasmapheresis. After the first round was complete we got an answer to the cause. MOGAD disease - rare, autoimmune condition where the immune system attacks the myelin sheath covering nerves. It causes severe, unpredictable attacks (relapses) like optic neuritis (vision loss), myelitis (muscle weakness), and brainstem symptoms.

So our son, Beau is just being the best he can be in this situation, and I feel like this is important to share because he is my hero. He got multiple pricks for bloodwork, he underwent a total of 5 two-hour long plasmapheresis sessions, and pushed himself to walk everyday. He got out of bed and greeted the day as best he could. I feel so humbled by his attitude and his willingness to adapt. He has had so much support and we are so grateful.

He was released from the hospital and was continuing steroids. But there is still a lot of healing that needs to happen. Which brings us to our next steps - We are now moving forward with a procedure called Intravenous immunoglobulin (IVIG), infusions deliver concentrated antibodies directly into the bloodstream to treat autoimmune diseases, typically 2–4+ hours. Now the amount of sessions is unknown at this time.

This all happened so fast and we are grateful to be back home. The road still feels long but we are hopeful. The consistent stream of medical bills coming in is very overwhelming. Please consider helping us on this journey as we go forward with faith toward treating Beau’s disease. Anything is appreciated and we can’t thank you enough for your continued prayers and support for Beau and our family. Gods Bless you all!