Today is Pierre Robin Sequence (PRS) Awareness Day. And, even if you’ve never heard of it, you know someone with it if you’re a follower of (cool) progeny… This guy. Who isn’t quite so little anymore.
PRS is rather uncommon. Frequency estimates range from 1 in 2,000 to 30,000 births, based on how strictly the condition is defined. In contrast, cleft lip and/or palate occurs once in every 700 live births. The condition is identified at birth, and is characterized by a small, recessed jaw and cleft palate (among other issues). The small jaw and cleft palate compromises the upper airway and makes basic functions like inhaling and swallowing extremely challenging.
Brennan had a rocky start. He spent 111 days in the NICU when he was born. He’s had 12 surgeries. He had a trach and feeding tube for three years. He had at home nursing care for years — complete with care coordinators and social workers, OT and PT. He’s been in speech therapy since he was three months old. We have bins of medical reports and insurance benefit statements. He is followed by a team of amazing doctors and medical providers from three area hospitals — and I’ve lost track of how many specialist appointments we’ve been to.
You know what else we have? A smart, wicked funny six-year-old who loves legos, Star Wars, and bacon. A kiddo who isn’t afraid to grab the mic in front of a crowd of strangers and belt out the National Anthem. A little boy who leaves it all on the soccer field, gets excited exploring historic sites, can rock a bowtie, has an infectious laugh, has a reputation for being “the mayor,” is genuinely excited to meet everyone he comes into contact with, has a deep appreciation for sarcasm, and never hesitates to ask if we can stop for a chocolate milkshake.
We are **the luckiest.** And we are forever grateful.
If you want to make a difference for families of kids like B, please join us for our 7th Annual Superhero Social to Benefit Little Lion Challenge on October 5th! It’s going to be an amazing evening for the whole family (tickets are just $10/person). Can’t make it out but still want to help? You can make a donation to Little Lion Challenge through the ticket link.