
08/25/2025
This little boy and his parents are true WARRIORS! He was born with campomelic skeletal dysplasia, a very rare often-fatal disease that limits most children’s lifespan to several months only.
Part of this disease includes features of Pierre Robin sequence, namely small lower jaw and blockage of breathing due to this. Not giving up, his parents opted for surgery to give him a chance at coming off the ventilator and going home. He underwent a mandibular distraction to lengthen his lower jaw, allow him to breathe without a tracheostomy and go home. He’s successfully home without any supplementary oxygen.
Since being home, he’s growing, gaining weight and, more recently, has been cleared to eat foods by mouth! He’s definitely defied expectations and amazed everyone he meets! 🌟