I have not updated this blog in a long time. Life just got very busy! But here I am again - still very much alive and kicking. The reason for my return - a wonderful email that I found in my inbox a few days ago from a father in Germany who's 3 year-old child was diagnosed as possibly having SEPN1. Feeling scared about a diagnosis he'd never heard before - he did what we all do when we hear of something for the first time, he started googling! Apparently he entered "SEPN1 blog" - and miracles - found this blog!
"Reading your blog and seeing how strong and independent you are, makes me hope again, that my daughter can do whatever she wants! Thank you for that."
You have no idea how happy I was to read that. To know that somewhere in a home in Germany, a worried dad stumbled upon this blog and it turned his despair to HOPE. Awesome!
Honestly, I was thinking seriously of saving myself $120/year and discontinuing this blog as my new German friend is the first person to contact me via the blog. Now, knowing that someone found it and felt more positive and reassured from a possible SEPN1 diagnosis - you couldn't pay ME to take it down. I am also inspired again to keep writing. And - I just added all the SEO functionality I can so MORE people hopefully find this blog!
Wishing everyone a happy and healthy 2018. In Judaism, the number 18 signifies LIFE (Chai), so I have a very positive outlook for the year ahead. Much love from Philadelphia!