Old Town Tug O War 2025 The recipient of all funds will be little Spencer Hayden ( Son of Poppy Stent and Kerry Hayden). This is a long story, because it has been a long journey. Please take the time to read this but if you remember nothing else, please remember this when you are considering donating to this wonderful cause:

Mummy: Why didn’t you tell me you couldn’t hear me?

Spencer: Because I didn’t think anyone wanted to talk to me anymore

Spencer is 6 years old and has been diagnosed with Riboflavin Transporter Deficiency, a rare nerve disease that affects only 400 people in the entire world. When Spencer was 3, he suddenly became extremely sensitive to sunlight, was unable to walk in a straight line, and his skin became like sandpaper. He was unable to enjoy his life, like any other 3-year-old, and he lost all his confidence. He could no longer get in and out of bed, go to the toilet, walk up or down the stairs and wasn’t sleeping. When he did sleep, he had night terrors. After 2 years of consistent GP and A&E visits, with doctors saying there was nothing wrong with Spencer, an urgent hearing test was requested by his mum. This is when it was discovered that Spencer had gone severely deaf.

The family’s world came to a stop, and when Spencer got his first hearing aids, his first words were, “I can hear mummy’s voice again”. This is when he told his Mummy that he had spent months thinking that the whole world didn’t want to speak to him anymore, heartbreaking. He believed that nobody in the world wanted to speak to him or have a conversation with him and had no way of understanding why.

Specialists worked together to understand what had happened to Spencer, including doctors from St Thomas’ and Great Ormond Street, and eventually in November 2024, the family received a diagnosis of Riboflavin Transporter Deficiency (RTD). If Spencer’s mum had not pushed so hard for that initial hearing test, there could have been a very different outcome for Spencer. Within weeks of receiving this diagnosis, Spencer was a completely different child! He is now able to tolerate sunlight, and his skin has cleared up. He is profoundly deaf, but he is awaiting assessment for cochlear implants, which will help. He also still has nerve damage caused by the RTD, which can make life more difficult for Spencer, although he doesn’t let that affect him, he’s the happiest and kindest child!

He is now proud of being deaf and spends his time decorating his hearing aids with special stickers and colours! Mum Poppy said "we know that he’s going to go on to inspire and help other deaf people to make the best of things".

We now turn our ask to you. Spencer still has several additional needs due to his condition and has three beautiful siblings, Delilah, Sienna and Paloma, who he adores. We are asking you for donations to improve Spencer and his family’s lives, and to help with additional costs such as hospital trips for ongoing treatments. Please dig deep and help us to raise as much money and awareness as we can for this lovely local family. And as an extra incentive, not that you should need one, lets show Spencers Nanny Hayley, that she can sadly leave us knowing we will always look out for her family on her behalf.

Thank you.