Katie's Diary

Day 12 of ubu’s Unite@Christmas

19th December 2017

Our twelfth ‘Sparkle’ Event and Christmas Gingerbread Competition

Dylan, who is 13 years old from Newcastle has a rare disease called Larsen Syndrome. It’s a condition that has damaged his spinal cord and weakened his joints. Dylan’s health took a turn for the worse this year and now he’s unable to feed himself can’t move his arms or hands.

He has been in hospital since September and has recently had an operation in Great Ormand Street Children’s Hospital in London. Unfortunately this time it wasn’t a complete success and so Dylan has come back to the Royal Victoria Infirmary in Newcastle.

All of this is, understandably, taking an incredible toll on Dylan’s parents and his siblings as they travel the country supporting him. They have also been holding fundraising events with their friends and neighbours to raise extra money so that they have enough to get the home adaptions Dylan needs. They are quite basic things such as an accessible washroom with a ceiling track hoist to make it easier for him to have a bath.

The people we serve in Newcastle and North Tyneside heard about Dylan and his family and all the difficulties and challenges they face together. “Every year we try to find a way to put some sparkle back into someone’s life in our community, we thought that Dylan’s mum and dad, Victoria and Davie, might well need a bit of happy sparkle to keep them going as they care for young Dylan through his illness with all their love and tireless support…”

“So we found out that Victoria and Davie would love to go and see the comedian Michael McIntyre who is going to be at the Metro Radio Arena in Newcastle next year. We have given them a couple of tickets for an evening out at his performance and we know that they will have a really sparkling and happy evening together”.

At the Hub in Harrogate, our Christmas elves have been celebrating with our guests, Day Twelve in our ‘Countdown to Christmas’ by singing “Rockin’ Around the Christmas Tree” together, dancing and generally having a brilliant time meeting up with old friends. Our competition today was for Christmas Gingerbread and we had some incredible entries! The people we serve in York decided to get together and work as ONE team. They made a whole village of gingerbread houses!

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Day 12 of ubu’s Unite@Christmas

 I decide what matters to me. ubu help and teach me to make my future happen 

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