JJ

Meet JJ! Jameson Daniel Walsh was born on March 1, 2016. There were no complications during birth and he passed the newborn hearing screen. His older brother could not pronounce “Jameson”, so somewhere in the first week when “JJ” emerged from big brother’s mouth, it stuck.

Right away, we could tell that something was off with JJ. He was much smaller at birth than his older brother, had severe colic, failure to thrive, constant ear infections, and was developmentally delayed. We first noticed he would not pick up the sound of my voice when I arrived at his daycare, but once he saw me, he would be excited. So we had the doctor test his hearing at his 1 year appointment. From that moment, we began the long process of getting the diagnosis of Profound Bilateral Hearing Loss. At the same time, we began physical therapy and occupational therapy to help with the developmental delays. We traveled to Mayo Clinic in Minnesota where they ran his first genetic test screen, all of which came back with no issues.

We began looking into Cochlear Implants so that JJ would have a chance at listening and spoken language. He had surgery to place his cochlear implants at 14 and 17 months. Still, we were not sure if he would be able to hear or even walk/talk, but our first success came on September 26, 2017 when we turned the first cochlear implant processor on. He heard us!

We hit it hard with every kind of therapy possible. Our neurologist was still unsure of what caused JJ’s health complications and suggested a full genome sequencing to get ahead of any other complications that might occur down the road. In 2019, we received the diagnosis of Smith-Kingsmore Syndrome.

The diagnosis did not change our course of action in regard to early intervention with JJ, but an instant Google search led us to a small group of families that could relate to what we were going through and that we shared a common bond with.

Despite his diagnosis, JJ is a happy and healthy boy and is making great progress with the help of the amazing medical support he receives.

Every second of therapy and struggle is worth it. JJ is a happy boy that loves his family, friends, soccer, PJ Masks, Spider Man, gummy bears and life! JJ turns 4 in March and is looking forward to celebrating a year of big accomplishments with many more to come in his future. He is our firecracker and he is unstoppable!

Written by Jessica, JJ’s mom