So the unique challenges faced by children and families are often not fully met by single support services. But having Usher syndrome is a combination of these challenges, compounded by the fact that deaf people rely on their vision much more than sighted people. Likewise, when a child starts to notice changes to their vision the family is introduced to vision impairment services, and another relationship of support begins. Support services for hearing loss are often fantastic, and many provide emotional support for the family as well as practical help from the early years and beyond. Thankfully many pieces of the jigsaw of support that an Usher child and family needs are already in place. I knew that if I couldn’t accept this for my own child, then I wouldn’t accept it for anyone’s child, and Usher Kids UK was born. These were not figures I could accept, especially when I looked down at my baby girl, and saw her looking back at me filled with just as much hope, laughter and personality as any other child. Statistics regarding unemployment and depression amongst the adult Usher community. It was a few stark facts which prompted me to set up Usher Kids UK. Not having a network may mean families feel stuck with the fear and isolation, and don’t have confidence that their child is getting the services they need. For a rare condition such as Usher syndrome, this is pretty amazing!īut not every family is in a position to access this support. It gives me the backstop of camaraderie, so that when we face decline or progression in my daughter’s condition I can immediately reach out to someone who gets it. This network of support gives me the strength to champion my daughter’s needs, and to know where to turn when the next challenge presents itself. I have met countless people with Usher syndrome, and regard my Usher family – a network of families, individuals and clinicians – amongst my most treasured acquaintances. I am supporting my daughter to develop and define her own identity, in a way that feels right to her. I can talk openly about Usher syndrome without having to mask my feelings inside. Roll on 7 years, and my attitude towards her condition is almost unrecognisable. Navigating this new world felt like a huge wall we had to climb, without any insight or experience to draw upon. 7 years ago, I knew not a single other person with Usher syndrome, and had never met another parent facing the same fears and challenges as us. 7 years ago, the dominant feeling I had when I looked towards my daughter’s future, with my baby girl in my arms, was fear. 7 years ago I would not have been able to say the word ‘deafblindness’ without a shiver going down my spine. This year, marks 7 years since our daughter’s diagnosis of Usher syndrome, and therefore 7 years of our eyes being open to the world of deafblindness. The former couple married in 2007 before divorcing in 2009.Įarlier this month, Usher dropped his new single “Bad Habits.” He also announced his first Las Vegas residency, which kicks off Jat The Colosseum at Caesars Palace.Every time a milestone or fundraiser comes around it gives me the chance to check in with myself and see where I am up to with regards my own perspective on Usher syndrome. This is the third child for Usher, who has two sons-Usher, 12, and Naviyd, 11-from his previous relationship with ex-wife Tameka Foster. ![]() It is coming closer to your loved ones and appreciating the ones that you have while you have them.” “I think everybody’s had the opportunity to just take a beat back and realize what really matters in this time, it’s family. “It’s been a tough time for everybody, so great to have this incredible news, this new arrival, really anticipating it,” he said. Earlier this year, they were seen attending events during awards season including the Vanity Fair Oscar after-party.ĭuring a recent appearance on “The Late Late Show with James Corden,” Usher opened up about welcoming a child during the pandemic. Usher and Goicoechea have been dating since at least October 2019, when they were spotted backstage at a Hollywood Bowl concert. Everyone is so happy and excited,” a source tells PEOPLE. “Usher and Jenn are overjoyed, and so is the whole family, including Sovereign’s big brothers. “Isn’t She lovely” by Stevie Wonder on repeat ❤️ ❤️ ❤️ ![]() We are feeling blessed and full of love with the arrival of our beautiful baby girl, Sovereign Bo Raymond.
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