By Gabby Meza, Juanito’s mom
Juanito is a jolly 19-month-old and the youngest of our blended family of seven children. His lack of vestibular ability does not stop him from climbing everything! He’s an inquisitive little boy who loves to interact with everyone, and even though he doesn’t walk just yet, he stops at nothing to get around everywhere with his little walker. Juanito was diagnosed at just a couple of weeks old with bilateral profound hearing loss. Receiving such a diagnosis was, to say the least, shocking, as we were not aware of any hearing loss within the family. But my husband and I clearly remember thinking, “No big deal, we’ve got this.” Right before Juanito turned a year old, we were able to confirm through genetic testing that he had the rare genetic disorder Usher Syndrome type 1F. That news was not received lightly. For the next days we went through a period of mourning and just flat-out disbelief. Thankfully, my husband and I are on the same page with moving on from lamenting and are solely focused with providing him all the love, confidence and enthusiasm he needs to adapt to his life with cochlear implants and future vision loss. His success is incumbent upon us, so we try to maximize the utilization of resources currently available for him through various agencies. As he continues to grow older, we will reassure him that great work is being done to help people with many different sight conditions, including his own. It is vital to us as his parents to stay informed of new research, different support groups, and new advancements in the fight against sight loss, as this will help him overcome the challenges he will be facing every day and will give him hope for the future.
