I hope to bring some understanding and insight into we’ve been through. I want others to be able to relate in some small way at the very least, even if they’ve never been in our situation before...
We are a family of four. My husband David and I had our daughter Emma in 2011, then our son Logan came along in 2014, completing our family.
Logan was a growing up and was meeting his milestones up until he was 9 months old. Then he began to show signs of low muscle tone and developmental delay. The doctors did not know why and Logan went through a barrage of tests. For the time being he was diagnosed with cerebral palsy and started physical therapy after his first birthday.
In June 2016, just before his 2nd birthday, we got a final diagnosis through Genetics/DNA testing. Logan has Alexander's disease. It's a very rare genetic condition that severely affects his nervous system...it also means that he will not survive past childhood. Initially his life expectancy is to about 3-8 more years, and at best we can hope for is that he makes it to his teens. We have since been told that he has 6-12 months left. There is no treatment or known cure.
We've been trying to share this with our closest friends and family in person, but as you can imagine, it hasn't been an easy task to find the right time to share this with everyone. Never has our family shed more tears...David and I are devastated and have been crying nearly every day.
Logan is a happy and loving little boy. So far he has not been in any pain due to his condition. We love him so much and we've been doing our best to cherish every minute with him. We ask for your prayers, love, and understanding during this difficult time.