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Freya's story

Hi Sunshine News readers,

We hope that you are all keeping safe and well.

We are pleased to say that after we launched our UK based Yorkshire Three Peaks trek just last week, we already have five trekkers who have signed up to take on the challenge and help support our charity!

If you would like to join them, please get in touch and we can talk you through the challenge and what it entails.

It’s a very special Sunshine News column from us this week, as we would like to share Freya’s story with you.

11-year-old Freya was born with CHARGE Syndrome.

When she first started school Freya was a little girl with a big personality, but she had a lot going on, she had a tracheostomy and gastrostomy in situ, had no natural balance and was registered with profound hearing loss and a severe visual impairment.

The school met all of her medical needs well, but her educational learning required a lot of adaptations.

It became obvious that Freya was eager to learn and as she grew she was proving as determined to do this, as she was to overcome her physical and medical challenges.

Her specialist Visual Impairment team would visit once a week and as she moved into year two they suggested to the school that Freya would benefit from access to a Davinci Pro CCTV.

The equipment cost in excess of £3,000, a hefty amount for any family to fund themselves.

Her mam Bev, wasn’t able to work due to all of Freya’s medical requirements and was a full time parent carer, enabling her to give her daughter the additional support she needed to thrive.

Bev submitted an application to The Chronicle Sunshine Fund, which was agreed by our Equipment Panel at one of our quarterly equipment meetings and Freya received her own CCTV.

She picked up how to work it very quickly, what then became obvious is that she lacked this access to books and learning at home.

This changed everything for Freya, she had access to everything her peers had and she wasn't struggling to see the text or images anymore.

The equipment was initially set up on the family’s dining room table and she immediately read her school book to her younger brother, she was his big sister now in every way!

Almost six years on and Freya still uses her CCTV every day, it has given her independence beyond the family’s wildest dreams.

She is an avid reader, many of the books she reads aren't available in larger print and for the ones that are they come in at least six volumes, big books, which if Freya were to read give her sensory fatigue as she is scanning larger areas of print.

She now goes to the local library and picks any book that takes her interest. Like any other 11-year-old, she goes to find books on topics she's covering at school and uses them to help with her homework.

She uses the CCTV to access all of her school work. Maths sometimes can be challenging with graphs and numbers, so alongside tactile representations she can view her work and see the smaller details enlarged to her requirements.

She uses it for art, draws and colours under the visualiser. She writes while watching the screen, a skill neither of her parents (nor Team Sunshine!) can master no matter how hard we tried!

Bev said: "It may seem odd to say but I believe that having her CCTV when she did, gave her confidence as she has grown. She is not reliant on us as parents to help her write or read for her any more.

"She is equal to her peers and she can complete her school work independently, write her own message in a card to her brother, seal it without anyone getting to see it first and even use it to change her batteries in her BAHAs, things even I could never of dreamt of.

"She will tell you she can do anything, just maybe a little differently than you, or with the help of a bit of equipment.

"The CCTV has played a huge part in that belief and seeing the difference it makes, we all believe that too!"

We often receive donations from Chronicle readers who read about the equipment we provide to local children and want to support our work.

If we can, we always send a personalized thank you letter, however many readers wish to remain anonymous.

So although we cannot thank you personally, we know you read about our work and we hope you feel as proud of our charity as we do.

Thank you

Siobhan x



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