Our small, closely knit, rare disease community lost one of our heroes. I have contemplated sharing this information because frankly, it makes it hard to breathe. When I saw the other mother’s post, my mind nearly imploded with grief and fear. I tried to push it out of mind so I could lead morning meetings and it has taken me a month to find words.
Over time, I hope this family can laugh again but I know life will never the same. Part of their heart is missing now. I am sharing this information as a reminder of why we fight. Aiden didn’t experience a cure in his lifetime. His body and brain succumbed to SLC6A1 and it wasn’t fair.
I have a solid faith that he is no longer suffering and for that, I am grateful. Hug your babies tight and be thankful for every day with them. Life is short and often unfair.