16th January 2017
We had the pleasure of meeting the inspirational Jo Milne, as part of our Healthcare Heroes campaign. Jo suffers from Usher’s Syndrome; a condition that meant she was deaf from birth and is now slowly losing her eyesight. She underwent life changing surgery that meant at aged 39, for the very first time, Jo was able to hear. Today, Jo travels great distances to give children the gift of hearing just as she received. Read her incredible story below:
Jo was deaf from birth but she never saw it as a hindrance. She grew up with two sisters who could hear and mum and dad treated each child with the same care and attention. The only difference she said was that, “My family and friends would have to look at me when they spoke so I could lip-read to include me in conversations, but I had great support and acceptance which meant I felt very confident being deaf.” As a result, later in her teens she became actively involved in improving services for people with disabilities and Jo also delivered disability awareness and equality training. But in her late 20’s Jo started to notice her sight was slowly deteriorating. “I’d been aware that my peripheral vision hadn’t been great for a while. I’d trip over things because if I looked forward I couldn’t see my feet.” She described her vision as like “Looking through an oval letterbox, above, below and to the sides are blank spots.”
As those blank spots were getting larger, Jo’s visual world was starting to shrink. Medical tests confirmed that Jo had Usher syndrome.Usher syndrome is a genetic condition that affects both hearing and sight and because Jo was profoundly deaf, she was petrified of losing a sense that she completely relied on. There is no cure for the syndrome and coming to terms with this brutal fact led Jo to suffer from depression. During that time she relied on others making decisions for her, like needing a guide dog on a permanent basis, which turned out wasn’t right for Jo. She gradually began to believe that surgery to improve her hearing could be the way forward. There was no guarantee that the cochlear implants would work but despite that Jo decided to go ahead with the surgery.
During that time, one of Jo’s friends contacted Lauren Laverne, BBC Radio 6 Music presenter. Jo became the subject of the show’s regular feature called ‘Memory Tapes’. Thousands of listeners contacted the show to suggest music recommendations for Jo. Following her radio feature, ITV’s This Morning launched #songforjo and it became a national debate on which song or piece of music people would recommend Jo should listen to when her implants were turned on.
“When it came to switching the implants on, I’d asked my mum to film it so I could share the moment with my family and friends.” The moment they turned the implants on, she fell apart. She was hearing for the first time which was extraordinary, but she was also carrying the emotion of her future sight loss. These implants could now guide her through the troubling loss of her sight and allow her to face life with a brand new sense. The film was uploaded for the BBC Radio 6 Music listeners and went viral within 48 hours. Just a week later she was on news channels in the UK and Europe, in papers, magazines and on blogs. She said, “I was on the news all over the world; even family in Australia and friends in South Africa saw the clips.”
The video has now had over 12 million views and has opened doors to things Jo could only dream of. She is currently part way through visiting the seven wonders of the world, a trip that has been donated by an anonymous businessman after he saw Jo talking about her sight loss. She is determined to build up a visual bank of memories. “My ever decreasing sight means I have to get out and live life to the full, capturing every moment and to be given opportunities like this is truly amazing.”
Another person who witnessed Jo’s video was an old school friend who was living in Bangladesh. She got in touch and the two arranged to meet. Around a similar time the ‘Hearing Fund’ got in touch. It’s a charity, set up by the Osmond family to raise funds and awareness for deaf children and their families. After initial discussions with the charity, Jo and Amina suggested the idea of travelling to Bangladesh and taking hearing aids with them for children with hearing loss. The charity agreed and a variety of different sponsors, including the BBC, got on board. Makeshift camps were set up in Dhaka to distribute hearing aids. Jo said, “We ended up taking over 500 hearing aids for children. The expressions on their faces were priceless. Some were hearing their mother’s voice for the first time, others were amazed by the sound of birds. Children don’t hide emotion, so you can imagine the joy I saw.”
Jo is continuing to work with the Hearing Fund in Bangladesh and is currently campaigning to bring sign language to the National Curriculum. “I would love sign language to be available for every child to shorten the gap between the deaf and hearing worlds.” Even though her sight is starting to fail her, the hearing implants have taken her world to another level, making her feel, oddly enough, ‘less blind’. Jo is two years post operation and she says that her life couldn’t be happier. She is embracing every opportunity that comes her way and will continue to raise awareness and be a voice for disabilities all over the world.
Read the stories of the other Healthcare Heroes here.