Eight year old Alexandria was born deaf and in November 2013, her family were devastated to learn she was also starting to lose her vision. Alexandria was diagnosed with Usher Syndrome, a rare genetic disorder which causes deafblindness. There is currently no cure and the doctors can’t tell how long Alexandria will be able to see.
She has already had an uphill battle all her life with her deafness, Asperger Syndrome and Attention Deficit Hyperactivity Disorder (ADHD).
Alexandria’s mum Trina and dad Chris felt alone and overwhelmed. Thankfully, they came to Deaf Children Australia’s Family Camp in June 2014 and realised they don’t have to face this on their own. Since then, they have made so many changes in their lives and feel much better prepared to face what is looming for Alexandria.
Trina and Chris shared Alexandria’s story:
“We got cochlear implants for Alexandria when she was tiny and until the camp, we didn’t realise how much her hearing loss was continuing to impact her. Managing the behavioural issues from her Aspergers and ADHD had been so difficult and had actually taken our focus away from her hearing loss. We realised, particularly through the panel with the young deaf adults telling their stories, how much Alexandria’s deafness is affecting her. It has helped us make some important decisions we had been struggling with.
When Alexandria was diagnosed with Usher Syndrome, we were told her struggle to see in low light will progressively worsen. Already, she is basically blind at twilight. At some stage, Alexandria will start to lose her colours and then her field of vision will gradually reduce to a narrowing, darkening tunnel. Her deafness will make her vision loss even more challenging, and her vision loss will make it harder to cope with her deafness. At the moment, she can read people’s lips but she will lose that ability as her vision fades.
The impact from the camp was so huge for us. Meeting other families with deaf children made us realise we are not alone on the moon in dealing with these challenges. We realised we needed as much help and guidance as we could get to address both the deafness and blindness. We reached out to DCA for help – and things started to fall into place.
Our DCA Family Support Worker Emma has provided lots of support and we have been getting help to address Alexandria’s vision loss as well. We no longer feel so overwhelmed and we are able to make decisions with a clearer focus.
The camp even helped us decide on another school for Alexandria. She was attending a tiny country school with thirteen children. It was ideal for her behavioural issues when she began but provided limited opportunities for friendships.
On camp, Alexandria was able to cope with a large group of children she hadn’t met before. She is very sociable but doesn’t always know the social boundaries. Yet amongst that group, everyone was accepting. Alexandria made some great friends, Ashlee and Olivia, who are also deaf. It really showed us how important it is for Alexandria to have connections with other deaf children and DCA’s School Holiday Program will be good for that. I hope we might be able to set up Skype conversations with Ashlee and Olivia so they can keep in touch too. Olivia started teaching Alexandria Auslan on camp and Alexandria was so keen, we thought we have to learn Auslan as a family. We received a CommuniCate kit from DCA to help us.
Now Alexandria is in a bigger school. She is extremely happy there and she is a lot more social now. DCA is providing deaf awareness training for the students and teachers.
We have moved to a new town to be closer to family support. We are looking forward to getting a Pets as Therapy Dog after DCA referred us to Guide Dogs Victoria’s program. Alexandria is so excited about having her own dog who will be able to assist her, and just always be there to keep her company.
Reaching out for help has opened up new opportunities and we now have a tremendous amount of support and resources. We feel a huge sense of relief. We were frozen by our grief before. It’s almost like we are on a new journey now, it has been incredible. This condition means all these changes are looming for Alexandria – but the future is looking a lot brighter now.
Alexandria’s story was shared with donors in the Summer Appeal. If you would like to donate, please go to our Donations page or phone our team on (03) 9539 5356.