The Secret Life of Cameron

Cameron loves visiting the park and trampolining.  His poor health over the years has led to lots of hospital stays, causing a huge strain on the family, but setting up a support network for families in similar circumstances been a huge help.

This is his story as told by his mum Carla.

Cameron was born with a rare genetic condition called Norrie Disease, which causes males to be born blind and suffer from progressive hearing loss. His deafblindness means he needs lots of adaptations to help enable him to access the world. He is non-verbal and has severe global delays alongside a metabolic condition that has resulted in a gastrostomy.

But Cameron is also fun sensory seeker who needs constant stimulation. His smile lights up a room and knowing he is happy is what gets us through each day. His favourite activities include swimming and trampolining and he loves visiting the park to play on the swings. He attends a specialist school two and a half days a week, where he receives therapies such as physio, rebound and hydro. It is important for us to include Cameron in family activities so he can someday gain independence. He has recently started to learn how to walk, and we love to celebrate all that he achieves rather than focus on the barriers he faces.

Cameron’s disabilities mean he requires one to one support at all times to keep him safe and promote his development. Unfortunately, because we get little support, this has a significant impact on our family life and on his two sisters, who sometimes miss out on activities that they love.

As a full time mum I’m often housebound, and don’t have enough hands to manage all my children’s needs. Even accessing public transport can be really difficult, with Cameron in a wheelchair and his baby sister in a pram. And, when we do go out, we avoid certain environments, because crowded places can lead to Cameron having a meltdown. This is because his severe multi-sensory impairment can mean that his senses can become overloaded.

toddler and mum smiling

We feel that raising awareness of the struggles families like us face will help increase public understanding and hopefully lead to improved care and support for disabled children.

We set up a Facebook page to promote awareness about Cameron’s disabilities. This has had a huge positive impact on our life as we have brought together a support network for families in similar circumstances. There, we can gain advice and support and also share our journey with people who are willing to learn about the things that affect our life and how best they can support children like Cameron.

We would like to see more services available in our area so families just like us don’t feel so alone and under such a strain. All our children deserve equal levels of care and attention.

This is the part of our life that most people simply do not see.

This is the Secret Life of Us.

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