My son, Bryce, is just three months old. He was diagnosed with a rare genetic disorder just days after birth.
He has Cornelia de Lange Syndrome (CdLS), a genetic mutation that causes many physical, cognitive and medical challenges. Also known as Brachmann-de Lange Syndrome (BdLS), it occurs in about one in 10,000 live births.
Many of Bryce’s physical features are affected. He has excessive hair, long eyelashes, upturned nose, low-set ears, extra small stature, eyebrows that meet in the middle, short arms, small hands and feet and an extra finger.
Some of his medical issues include, but are not limited to, multiple heart defects, GERD (severe reflux), inability to feed orally (causing the need for a G-tube as well as a fundoplication surgery), undescended testicles, hypospadia and much more.
We have been in the NICU for three months now, and they still can’t seem to find out reasons for some of his issues. He is currently breathing on his own, but every few days, his lungs collapse and he goes into complete respiratory failure.
We cannot find a cause or reason for this, so we just have to keep on “keeping on.” I know that we will make it through this, but I also know that this will be a life full of complications and hospital stays.
He is definitely a fighter though, and he proves that to us every day.
He has four brothers and sisters and a mommy and daddy who love him more than the entire world and many, many more who love and support him.