The simple and routine can be the things you wish for most with a rare disease. In fact, the routine and normalcy are often what you dream about when pain strikes fast.
Migraines, eye movement, eye strain, constant nausea, and no answers was a recent update we received from another patient Kelsey’s age. She is currently experiencing daily episodes of pain and discomfort without relief or answers.
Today, as we look at Kelsey and her treatment plan, we continue to be grateful while it works for her. Talking to this family made the ever-changing nature of a rare disease deeply troubling. We learn from each other and hope our doctors can safely manage all symptoms to give our children comfort and relief.
We count our blessings every day and hope that this family can soon look back on this difficult time. Our family efforts to further fund research and awareness are always on our mind to help those we know who struggle.
Be brave. Be grateful.