Ruby's story

Three-year-old Ruby has loved getting messy with watermelon at The My Time To Play sessions organised by Guide Dogs. Her mum Magdalena says the sessions have been so important to improve Ruby’s confidence and introduce them to other families.

“I first noticed Ruby’s eyes wobbling when she was nine months old. We were heading in to town to meet her Nana for breakfast so we popped in to Specsavers and they recommended we go to the eye infirmary. That’s when everything escalated.

"They sent us to our local hospital where they started talking about brain tumours and MRI’s. Then we got sent over to Newcastle Hospital and they started throwing around words like cancer. After three days on the neurology ward, they told us she had Spasmus Nutans which is head bobbing and eye movements that goes away on it’s own. But when we went back to the eye infirmary, they said disagreed and said it’s nystagmus. So with that diagnosis, Ruby got some glasses, we continued as normal and nobody said anything else.

"Then when Ruby was two, we were at a regular eye check and our ophthalmologist turned around and said to us ‘Do you want to register her as vision impaired?’ My husband and I were so shocked. No one had really explained how much her vision was affected.

"Since then, it’s just been ongoing genetic testing. Nearly three years after first going to the hospital, and after whole genome testing, Ruby has been diagnosed with Lebers Congenital Amaurosis.

"When we first got the diagnosis, we were really upset because of the degernative nature of the condition. We were scared for Ruby to possibly have to navigate the world with little vision in the future and how hard that might be. We started a list of all the things we wanted to show her, like the dinosaurs at the Natural History Museum, to make sure she gets to see everything she can – while she can. We began researching clinical trials and treatments but there is nothing that can help at the minute. We were really upset.

"I then called Guide Dogs and spoke to a lovely lady who actually has the same condition as Ruby, caused by the exact same gene mutation. It was the best conversation I think I’ve ever had. She made us realise that everything is going to be okay. No matter what happens with Ruby’s vision, she will still be able to do everything that everyone else can - sometimes just in a different way or with a little help. She showed us that Ruby’s future is bright - she can have a great career, family life and can be happy.

"It's not the first time Guide Dogs have been there to lean on. When we first took Ruby to the eye infirmary they told me that I could apply for Disability Living Allowance (DLA) but the application is so long and confusing and I had no idea what I was doing. I contacted loads of charities asking for advice but Guide Dogs was the only one who said they could help, and even better they had a list of other things they could help with too. Through just contacting them about filling in the DLA, I’ve got so much support.

"We signed up to My Time To Play before it started in the North East and about a month later, Habilitation Specialist Louise rang me for a chat about Ruby. Louise then came to the house to find out what skills Ruby needed to work on. We decided to concentrate on fine motor skills like opening jars.

"The sessions were really exciting. Ruby loves other children and people in general. Ruby’s favourite part was when we got a watermelon and scooped out all the insides. Ruby was trying to pick out the seeds, getting really messy and then eating it. Usually, she doesn’t like getting messy but now she’s more open to it. Because of the sessions, she can now open jars and screw tops and we’ve nearly mastered closing them too. You could see her changing week by week. She’s definitely grown her skills and her confidence. Learning through play is genius.

"The sessions were really good. I was really excited because I was looking forward to meeting other parents who have children with a vision impairment. The first session was Ruby and a little boy and it was so good just talking to his mum and someone who knows what I’m going through, all the appointments and how you’ve got to watch them all the time. It was really lovely and I’ve kept in touch with her.

"Some parents at other playgroups don’t understand. Ruby has good days where she hardly trips at all then bad days where she’s constantly on edge, putting out her hands and falling over. There has been a few instances recently where I have been asked by other parents 'Are her eyes ok now then?' But, it was great going to My Time To Play where other parents understood the ups and downs.

"I encourage everyone to try a My Time To Play session and if we get chance to take part in the future, we definitely would. We’re really grateful to Guide Dogs; from this playgroup to helping with the the education, health and care plan (EHCP), to the lady who helped us come to terms with Ruby’s diagnosis. There are so many information and services Guide Dogs provide that people don’t know about.

"It’s still upsetting that my little girls eyesight will probably get worse, but as long as we’re there to support her and she maintains her ‘I can do it’ attitude everything will be okay."