Wednesday, December 2, 2020

Santa steps in to help youngster with rare neurological disorder


* Santa gets ready to zoom into action and chat virtually about all things Christmas with Nightingale House Hospice’s young supporters.

Santa Claus is all for making children’s dreams come true and this year is no exception, after fundraisers at Nightingale House rallied to take the stress off one youngster and his family. 

Normally the very sight of Santa Claus in person can cause upset and distress for 15-year-old Jake Edwards-Owen from Johnstown.  


Jake, a pupil at St Christopher’s School in Wrexham has a rare condition known as Angelman Syndrome affecting around 1:20,000 births. As a result, he has severe learning difficulties, delayed development and very limited speech.

 

It is not unheard of for Jake to run away at the very sight of the real Santa, when a trip to St Giles’ Parish Church Christmas concert in Wrexham turned into a hunt by his mother for the youngster after he bolted from the pews as he caught a glimpse of the man himself coming down the aisle.

 

The hospice is organising virtual Santa Calls for 2020 and as the hospice’s Santa is an expert in Makaton sign-language the team were happy to help arrange an extra special call for Jake. 


All money raised from the event will go directly towards patient care and family support at Nightingale House Hospice.

 

Jake’s mum Helen Edwards said that as her son cannot communicate verbally a virtual chat with Santa from the comfort of their own home would be the perfect setting to eliminate any stress. Nightingale House is close to her heart as her late father used the facilities in 2004 so the family have always thrown their support around the hospice.

 

She said: “I rang the hospice and told them about Jake’s communications difficulties. When I spoke to Sam in the fundraising team, she couldn’t do enough to help us as a family. 


"Some people may think it’s unusual that a 15-year-old wants to see Santa so I wanted to see if I could go on the call with him. 


"They went one step further and told me that Santa signs in Makaton which Jake can understand and put plans in place to make it happen. I think he’ll be much more comfortable with this arrangement rather than seeing him face to face.”

 

Sam Amis, fundraiser at Nightingale House, said: “We are delighted to help Jake and his family have an extra special call with Santa this year and I’m sure he’ll have a long list of gifts he’d like ready to pass on to him. With many Christmas events being cancelled this year – we didn’t want our lovely younger supporters missing out on the opportunity to see Santa.

"The Santa Calls have been a magnificent success and we have introduced extra days to ensure he can speak to all the children who would like to chat.”

 

Helen added: “Thank you to Sam and the fundraising team at Nightingale House for making this happen for us – I am confident that our Santa Call will make it an extra special occasion for Jake and his younger brother Callum this year. Please support the hospice as it deserves every penny that it gets.”

 

* You can book a personalised chat with Santa direct from the North Pole via the website https://www.nightingalehouse.co.uk/event/santa-calls/or by ringing the fundraising team on 01978 316800. Santa will also send each child a personalised letter and a bag of magic reindeer food to sprinkle on Christmas Eve. Tickets are £15 per family (maximum of 3 children, additional children £5 each).



* From left, Jake with his brother 

Callum and Nana Jean.

No comments:

Post a Comment