The story of Erin Kilmister
This is my son Noah, presently age 20. It took 18 years and many misdiagnosis and a lot of insistence and arguing, to win the battle to have further genetic testing, with a knowing a mother has, that they didn’t have the right diagnosis. What did it change? Well, sadly nothing, there is not enough known cases or research out there. And happily, nothing. Noah is still the same charismatic, opinionated, insightful soul, he genuinely cares for those around him and his world. His love of film (and behind the scenes), and Marvel and star wars, and most of all trains has only grown as he has grown. Over the past couple of years he has gone blind in one eye, had his first seizure, and his left lower leg is turning inward. This has not stopped his love of reading, his daily self regulated walks, his maturing, or his capacity to grow. I was once told he would never walk, when we returned his orthopedic physician asked how it could be? I said, “I never told him he couldn’t “. No matter what specialists say, we know there is not enough information to make these calls on the future. So we are out to make our own. Sadly this is not allowing us to add a photo, but you would see a young man with a smile that can light up your heart and kind eyes that see this world in a beautiful way!