The Story So Far
Louis was born in January 2010 to proud parents Emily and David, and was an eagerly awaited younger brother for two year old Frankie. The day he came home from hospital, his parents knew something was not quite right and began asking questions. At eight weeks of age, Louis was diagnosed with congenital bilateral sensorineural hearing loss. Within two weeks he was fitted with hearing aids which became know as his "giraffes". Although they would not help him to hear, they played an important role in maintaining the health of his auditory nerve while his parents investigated the possibility of cochlear implants.
At eleven months, and then again at thirteen months, Louis underwent a three hour cochlear implantation surgery. With his new "ears" he was responding to sounds within weeks, and within months he began saying his first words. A dream come true for his mum and dad.
Meanwhile, still not happy with other areas of his development, Emily and David began investigating the cause of his hearing loss. In July 2013 after months of genetic testing, Louis was diagnosed with Usher Syndrome.
Usher Syndrome is a rare genetic condition causing sensorineural hearing loss from birth, progressive loss of vision due to retinitis pigmentosa and vestibular dysfunction. There are several different types of Usher Syndrome with a range of severity. Louis has Type 1b which usually means problems with vision develop in the first 10 years of life. Due to the vestibular dysfunction, developmental delays in sitting and walking are common.
There is currently no cure.