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General Information

Brett Joseph Gillum was born January 19, 2000 at Inova Fairfax Hospital, where he spent the next nine (9) weeks in the Neonatal Intensive Care Unit (NICU). While doctors had suspected during the pregnancy that Brett might have some medical issues, nobody imagined that he would be diagnosed with a rare syndrome. Within a few days after birth, Brett was diagnosed with Chondrodysplasia Punctata (Brachytelephalangic type).

Chondrodysplasia Punctata is a skeletal disorder that carries several characteristics that can be noticed upon physical examination - most notably is the small, underdeveloped nose (sometimes referred to as a Koala Bear nose). Typically, those with this syndrome will also be shorter in stature and have smaller, dwarf-like hands and feet. Among these characteristics, there can be significant medical issues - and in Brett’s case the most critical was his respiratory status. The cartilage throughout his body - especially within his chest wall - was underdeveloped and “floppy” which ccaused problems with his breathing. Brett required a tracheostomy and was put on a ventilator for support. The good news was that Brett could breath on his own and only used the ventilator for “assistance”. He was also fortunate enough to be brought home on a state-of-the-art ventilator that was the size of a laptop computer. (Thanks to Betty, his respiratory therapist, who found this ventilator and worked with us until Brett was comfortable with it!)

Over the past two years Brett has continued to make great progress, but during this time other medical issues were discovered. Brett was diagnosed with a hearing loss bilaterally and requires hearing aids. It was also determined that he had optic nerve hypoplaysia - which means that the optic nerves connecting the eye and the brain are underdeveloped - and we are uncertain of the extent of his vision. We do know (thanks to Peggy, his vision teacher) that he sees some things and we’re working daily to improve what vision is available. Most serious of the discoveries was the spinal cord damage at the C1/C2 level of Brett’s spine. While to this day it is still unclear how this damage occurred, the good news is that the damage has not impacted any of his major body functions. He is able to move parts of his body on his own, but he requires assistance from caregivers for all of his mobility. -- To hear more about Brett’s current care and progress, visit the Latest News section --.

Some may read this brief overview of Brett and wonder how a child with so many limitations could be living a happy life. Those who know Brett know he is most definitely a happy boy, and everyday does something to remind us that his abilities far outweigh his disabilities.