Sanfilippo syndrome

I came across a video on TikTok about Sanfilippo syndrome and my heart aches and shatters for those who have received this diagnosis. I have a 1yr old and currently 35weeks pregnant and learned with typical genetic testing, Sanfilippo syndrome, is not one that is included in the genetic testing! For the past few days I’ve been going down a rabbit hole of videos containing 100% healthy milestone reaching babies only to

Become debilitated unable to speak and eat by the age of 4, with a shortened lifespan of early to late teens 🥺. I’m trying to not fixate on this fear but it has me anxiously staring at my 1 yr olds facial characteristics, his eyebrows, nose bridge, his clumsiness etc. super closely. My upset and fear of, God forbid, this particular terminal diagnosis is taking over my brain 😞. May God bless those parents who are living day to day with one of your babies having this evil disease 😞 May God be with us all 🙏🏼