Hi there fellow face booker’s. As you are all aware its not very often that I post comments so I would really appreciate if you would all take the time to read this post as it is very important to a very dear friend of myself and Jo. Her name is Sandra and she lives here on the Gold Coast. Her and her husband Michael have 3 beautiful children, 2 of which were born profoundly deaf. We first met Sandra when she came to Jo with Christian, her first child born profoundly deaf to music classes when he was approximately 9 months old just after he had his first cochlear implant. It was suggested to Sandra & Michael that he be involved in a music program to help him get used to his new implants and help with socialization. This is where our friendship and admiration started. We have seen Christian every week for music since this day – he is now in Grade 2 at school. Christian received his 2nd implant when he was nearly 3, and things really started to improve for Christian. He would sing, dance and be involved in classes with enthusiasm. With the help of speech therapists, the Hear & Say Centre and a lot of positive reinforcement from his parents, Christian was growing up with the best experts at his fingertips. Christian’s sister, Georgia was born in 2009 and after many tests; she too was born profoundly deaf. Although, this was a big blow their amazing attitude shone through when she realized that she had ‘been there done that’ with Christian. Technology had improved since Christian, so Georgia had her cochlear implants a lot sooner, which aided for a better integration into everyday life. In 2013, they were given the biggest challenge of all. Both Christian & Georgia were diagnosed with a very rare disease – Usher Syndrome – a genetic disorder that effects people with partial or total hearing loss. It results in a gradual vision loss caused by Retinitis Pigmentosa. Eventually Georgia & Christian will become blind. With no known cure, their future vision is very bleak. So now they have 2 children that are Profoundly deaf and are going to eventually be blind as well. This is a true-life battle for Sandra, Michael and the children. Things that we take for granted will be lost to them. Conversations that Sandra & Michael have had are so different to ours – things like they will need to take them to places like Disneyland before they lose their sight. They are now focusing on the things that they know that Christian and Georgia will be able to achieve without vision. With true strength and total optimism, they move forward as a family. I look in amazement at this family. Jo is currently still teaching both Georgia and Christian music classes, with Christian learning the piano and playing beautifully. Jo is teaching him to be able to play by feel and by ear – so that he can still play when eventually he loses his sight. Georgia will do the same when she is old enough. So, this brings me to why I have made this post today. Sandra posted on her facebook page today: Hi all, anyone who might be interested in helping me get to the US this June for the annual Usher syndrome conference let me know. Its an amazing opportunity to meet others experiencing this condition. Not sure if my partner can get time off to mind our children yet but would be my dream to learn more to help my kids. Any contacts out there that might help me fly to Boston for 3 days to hear the big specialists from overseas talk would be a dream. No harm in asking. If I could possibly help her live her dream of going to Boston in June, then I will do anything I can. Im hoping with the support of the wider community, we can raise the funds to get Sandra there. I would really love to be able to raise enough money to send their whole family along for the trip and perhaps we could send them to Disney Land as well. Sandra is not one to ask for handouts so the facebook post this morning surprised me and is obviously very important to their family. If there is any family that needs a break, then it is this family. Please help me get behind this family. Message me if you can help.
Posted on: Sat, 05 Apr 2014 00:23:05 +0000
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