Jaxx was born on 7/8/16. He was born with bilateral club feet and at one-week-old, he was also diagnosed with severe hearing loss. Jaxx’s parents visited an ENT (Ear, Nose & Throat specialist) who believed that Jaxx suffers from Goldenhar Syndrome. Because Goldenhar Syndrome cannot be detected in blood work, the diagnosis was made based on physical criteria: club feet, under developed chin, and Hemifacial Microtia (which has affected his hearing among other things). It is common for those who suffer from Goldenhar Syndrome to also have Hemifacial Microtia. Thankfully, his Hemifacial Microtia is very mild and only caused his right ear to be half the size of his left ear. Generally, patients who suffer from severe Hemifacial Microtia have only a nub or no ear at all. In an effort to protect Jaxx's good ear, he had a tympanostomy tube surgically implanted. The tube will help prevent ear infections in his good ear, in turn decreasing the chances of any further hearing loss.
As is the case with most patients who suffer from hearing loss, Jaxx’s parents encountered obstacles with their health insurance. There was no resolution in obtaining approval for Jaxx's hearing aid as most (if not all) insurance companies do not cover hearing aids. Funding for his hearing aid was denied three times. After conducting further research, Jaxx’s mother obtained the help that their family needed through Early Steps. Early Steps helps families with children who have developmental delays. Eventually, Jaxx obtained his own hearing aid and he began to receive the therapy and help that he needed. Jaxx's hearing aid is bone conducting. That is because it has become a challenge to determine whether or not he has an eardrum since his ear canal is blocked. Because he is too young to have the bone anchored system surgically implanted, he uses his hearing aid on a soft headband that works as long as it is gently pressed against his skull.
Unfortunately, Jaxx has also had to deal with other health issues such as contracting pneumonia twice & developing an allergy to penicillin that was not detected early on. At night, he wears boots with brace, which he’ll need to utilize until the age of two. Jaxx is also being slowly introduced to solid foods. In the midst of all of this, Jannette (Jaxx’s mother) has remained optimistic. To her, Jaxx is perfect just as he is.
I met Jaxx and Jannette briefly back in April at a Curlpop World natural hair meet 'n greet that took place in Tampa. Prior to the event, Jannette contacted me to ask if it was okay for her to bring Jaxx. She and Jaxx attended the meet n' greet, but I had no idea about Jaxx’s health issues until a couple of others who attended the event approached me to inform me that Jaxx suffered from severe hearing loss. I found it odd that this beautiful child was crossing paths with me at a curly hair event. Not only that, but after briefly speaking with Jannette, I learned that we have mutual friends. Jaxx and I both wear hearing aids (albeit different kinds and due to different circumstances) and a curly hair event brought us together! That moment was the epitome of Hear For The Curls, a concept that I created four months prior. but never really pursued until recently. My encounter with Jaxx was this journey's first stop.
Jannette, thank you for sharing Jaxx's story with me. Many blessings to you and your family. I have no doubt that Jaxx will grow up to be an incredible human being impacting the lives of many. Despite all the challenges that he has faced, he manages to smile as a result of all the love he receives. You are an amazing mother for standing by him the way that you have.