Mum recalls the day her baby daughter was diagnosed with sight loss - and the importance of the RSBC’s support

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Mother of two-year-old Maya says she hopes her daughter will “show the world just how much you can achieve when you’re blind”

Little Maya was just nine weeks old when her mum, Sharn Hughes, was told that her daughter had a rare genetic condition causing her to be blind.

Talking to NationalWorld, Sharn explains the “crushing” experience of receiving the diagnosis for Maya, and the importance of the Royal Society for Blind Children’s support.

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Sharn hopes to raise the profile of the RSBC and their services, while also supporting other families across the country affected by sight loss.

The mother, from Shropshire, encourages “all parents that find out that their child has got a visual impairment of any kind, of any severity” to “definitely get in contact with the RSBC”.

Sharn Hughes

‘Four words that changed my life forever’

The day Maya, now aged two, was diagnosed with sight loss was the worst day of Sharn’s life. She recalls “it felt like someone had crushed me.”

“The day was a blur, I don’t remember going back to the car,” she says.

“I woke up as one person and went to bed as another.”

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Sharn explained feeling “absolutely broken as a person” on the day of the diagnosis.

However, in a hospital waiting room days after the diagnosis, she met one of RSBC’s local Family Practitioners through their Family First Service.

The words “if you ever need somebody to talk to, we’re here for you” from the local practitioner completely changed Sharn’s outlook, allowing her to contact and speak to someone for support.

‘If it wasn’t for all the support we might still be in a very deep and dark place’

The RSBC gave Sharn and her family a “newfound vision for the future”, filling them with hope and optimism.

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Sharn explains how the support from the local practitioner and the RSBC completely changed their family’s life, from offering resources to a sibling support group for her other two children.

Sharn Hughes

“They’ve provided a safe space where I can explore my feelings, and the local practitioner suggests play ideas, resources, and signposts me to useful services,” she said.

Sharn adds the local practitioner showed her “that there are no limits for Maya – just adaptations that can help her to achieve all the usual milestones any child would expect to achieve.”

‘She is incredible and I truly have to pinch myself that she’s mine’

The RSBC’s support made a huge difference to Sharn, her daughter and her family’s journey.

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“We wouldn’t be as stable as a family or looking ahead to a bright and exciting future without the support,” Sharn says.

“Now I watch Maya every single day in complete and utter wonder. I hope she’ll believe in herself enough to make her own choices, have a career and maybe one day have a family of her own.”

Sharn Hughes

How can I support and donate?

There are an estimated 37,000 blind and partially sighted children and young people in England and Wales.

Every day, four more children will be diagnosed with sight loss.

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The RSBC charity works to help families and children affected by sight loss, and Sharn hopes people will support the charity and its goal to expand.

Sharn Hughes

If you would like to help more families like Maya’s to get the support of an RSBC Family Practitioner, you can donate to the charity’s Christmas Appeal.

Sharn will also be setting up a Facebook page called ‘Maya’s Mission’ to help blind children spend more time in mainstream education, that you can follow and support.

There is currently a GoFundMe page to support Maya in mainstream nursery.

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Sharn’s goal is to raise £2,500 to revamp Maya’s nursery garden to create a safe and inclusive environment for all pre-school children, making it accessible and free from hazards.

Through her own efforts and recent Halloween fundraiser she has raised money to go towards the new sensory garden at Maya’s nursery.

She hopes to set up a charity like the RSBC in the future to continue supporting families and raise awareness of childhood sight loss.

The RSBC “helped me process everything” and “gave me that safe space to speak.

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“It is a charity that will stay close to my heart for a long long time.”

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