Cian's Story

Age: 3-years-old

State or Country: Ireland

Date of Diagnosis: February 2022

What is the hardest part of your day? It's hard to think of a hardest part of the day when Cian greets us with a huge smile and quite often, clapping hands, when we arrive into his room each morning. Cian brings so much joy to our family and to those who meet him that it overshadows the tough journey we are on. It's impossible to describe to others the feeling you get knowing your child may never speak with a full vocabulary or even say "I Love You" and that every milestone for their children is in fact about 100 little milestones for us. To be honest though, for us, the hardest part of our day is not Cian, but the fight to get him the support and services he deserves from those organizations which exist to support those with disabilities. 

What does your child struggle with? Like all NARS1 kids, Cian has little or no speech. He has hypotonia, and this coupled to neuropathy and the gait abnormality linked to NARS1 makes progress with walking and  gross & fine motor skills and real challange. Again, as with others, Cian has a learning disability. While he understands many of the words we say, he stuggles with building a perspective and understanding. To put it simply if we ask Cian to get something he will look for it but if we say something is hot or dangerous he does not comprehend.

What brings your child joy? Cian is a child who seeks out play and loves fun. Throwing ball, and being up in our arms dancing, and being silly in any way gives him massive enjoyment. He loves interacting with people and getting attention, especially the attention of other kids. Lewis Capaldi and Bing Bunny are two absolute favorites of Cian. In terms of mood and emotion, a bad day for Cian is like a Friday for the rest of us, and we are blessed to have a child that finds so much fun in life

What do you hope for your child? That Cian gets to meet his full potential. It's hard to understand Cians potential so we are always conflicted with pushing him to work hard while not pushing so hard that he becomes frustrated and loses his massively positive spark. We live in a country, thankfully, where being kind and thoughtful is in peoples DNA, and so we can only wish that Cian will continue be treated with kindness and understanding by everyone who comes into contact with him. Above all, we hope that between speech, sign and AAC we can find a way to communicate with Cian to help us to further understand his perspective on life.