This year has already brought me so much joy. On December 31st, I received a personal message on Facebook that confirmed a number of 2 families who contacted me in 2015 with sons who have been diagnosed with Bcap31.
After being told by their neurologist that Jason and Sean were the only diagnosed case in the US as of December 31st, 2015, we recently learned that there’s actually another case that has developed here.
I haven’t been aware of any support/awareness groups for this genetic disorder which is the reason why I decided to start my own and share my family’s story. I also would like to encourage these families who’ve reached out to share anything about themselves and I want to let them know that they always have a friend in me.
I’m very excited to see how things evolve this year and I’m even more thrilled to build new relationships.
If you or anyone you know has a relative that was recently diagnosed with this genetic disorder, please comment on here, or message/follow my Facebook Page.