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6. Rio

“I try and help them all as best I can.”

Sylvia Langford, from Devon, gives a grandmother’s perspective as she tells the story of her grandson Rio, 20, and how his diagnosis of Batten disease CLN3 has had an impact on the whole family  

20 years ago, Rio was born: my first grandchild. He was adorable, and everything seemed fine. 18 months later his sister, Kimi, arrived.

All seemed perfect.

After a few years, Rio started to stand really close to the TV. We said to him many times, “Rio will you get back from the telly,” but as we now know, this was the start of things going wrong. My son and his partner started the long road to finding out what was wrong. They firstly thought it was his speech as he wasn’t talking and it took months to see a speech therapist.

Diagnosis

In the end Rio was diagnosed with CLN3 Batten disease which was devastating. I don’t think my son could take it all in to start with. When they told me, I had never heard of Batten disease. Even now, everyone I mention it to hasn’t heard of it.

Rio went to mainstream primary school, with one-to-one help which was great.

My son has difficulty talking about Batten disease and Rio, even now. Unfortunately, my son has had to be Rio’s sole carer for several years. He has done, and is doing a fantastic job, but it hasn’t been easy for him. My son found that social services weren’t too helpful when Rio went from child to adult, as all the services changed. But he has overcome all this, and always goes 100 per cent over and above for Rio and his sister Kimi too.

The whole family

Rio’s journey with this disease hasn’t been easy for Kimi. She will be 19 in a couple of weeks. She was very young when all this started, and it has affected her greatly. But I am happy to say she is a lovely young lady of 19 years, and is slowly making what she calls a normal life for herself. She helps my son with Rio and is a loving sister.

I try and help them all as best I can. They only have me to turn to when they need help and I am only too happy to do what I can. I live 75 miles away, but I see them once a week or more if they need me.

My son is a very, very private person regarding his children, which I admire greatly. He does everything he can for both of them.

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