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Parent of Rusper teen urge public to support local charity’s fundraising weekend

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THE parents of a teenager with a rare genetic condition affecting only around 30 people worldwide are urging the public to back a Mid Sussex charity’s big fundraising weekend. 

Mikey Turner, 17, from Rusper, has been living at Chailey Heritage Foundation for four years after his health had worsened at home and it wasn’t safe for his parents to look after him. 

Mikey, his parents and two sisters are now all taking part in their own challenge events on Sunday May 31. 

And they are asking the public to join in as well, raising much-needed funds for the charity, which is based between Lewes and Haywards Heath. 

Chailey Heritage’s annual fundraising Focus 10k event, due to be on Sunday May 31 at Borde Hill Gardens near Haywards Heath, had to be postponed because of the Covid-19 crisis. 

But now, instead the charity wants people to take part in their own sponsored 10k, 5k or mini mile on the same day, or any time until June 14. 

Any money raised will be match funded by Focus Group, based in Shoreham

Mikey’s dad Andrew said:

“Me, my wife, our two daughters and Mikey are all joining in, and we urge everyone to as well. 

“As a family of five, we will each be completing two tasks on the Sunday May 31. 

“One daughter who’s in Australia at the moment, will be planting melons for 5k. 

“Mikey’s two challenges are to be in his ‘stander’ for ten minutes and also to complete a 5k bike ride onsite at Chailey.”

It was at the age of around three that Mikey’s parents, Andrew and Jenny, thought something may be wrong. 

Mikey appeared clumsy at times and there were problems with his speech. 

Six years later, and aged nine, Mikey was finally diagnosed with a rare neurodegenerative illness called genetic malfunction of the UBTF gene.

His parents invested in a purpose-built house at Rusper, between Crawley and Horsham, to help look after Mikey but when his condition worsened four years ago, he moved into Chailey Heritage Foundation. 

Mum, Jenny, 56, said:

“Chailey Heritage has been an absolute lifeline for us.  

“We were really struggling back in 2016. Mikey’s needs had become more and more complex and he required a team of eight carers to provide care 24/7.

“When we first visited Chailey, we were both struck by the very positive ethos, and now it feels like home from home for Mikey. 

“We regard Chailey Heritage as an extension to our family. The staff are amazing and there is huge trust between us and all those who care for Mikey.” 

Dad Andrew, 59, said it was a huge step for Mikey to move out of the family home.

He said:

“We see the excellent care that Mikey receives and have huge admiration for the role of all the staff. 

“We were struggling with Mikey but the last thing on our minds was that he might have to move to be cared for. 

“It was a huge step for the family and the feeling when we got into the car and left Mikey at Chailey was a dreadful one. But we could not provide the quality of life that Mikey needed”. 

At Chailey Heritage, with the help of the specialist team, Mikey is able to take part in a wide range of activities including swimming and IT lessons. 

Mikey’s condition was undiagnosed for many years, which made it hard to plan for his needs.

Even now with a diagnosis, planning is hard as he is one of so very few with this condition and being one of the eldest, neither his family nor the team at Chailey know what to expect.

Mum Jenny said:

“He communicates with a subtle nod of his head but he has lost the ability to laugh, cry or smile. He was due to come home for a four-day Easter holiday but that was put off because of the coronavirus and staff said he felt very low that it wasn’t happening. 

“We haven’t seen him now for nine weeks and that is extremely difficult. He normally comes home three times a month and we make sure that is real family time.  

“We would all like to say a heartfelt thank you to everyone at Chailey Heritage Foundation.” 

One of the ways the Turners would like to show their appreciation for Chailey Heritage is to take part in the charity’s fundraising events.

Nina Gopal, Chailey’s Head of Fundraising, said: 

“We are naturally very disappointed that, like so many events, our annual Focus 10k has been impacted by Covid-19.

“But like many other charities, we are still in need of funds so we decided that the event could still take place but in a different way.  

“The government is now advising people that they can take unlimited exercise with social distancing, so why not take part?

“The challenge is to complete your own 10k, 5k or a mini mile for the younger ones and seek sponsorship.

“If you don’t want to run, you can still join in by devising your own challenge connected to the number 10.

“Ten bunny hops, 10 press ups or 10 laps of the garden – the important part is to stay safe and have fun raising much needed funds for young people like Mikey.”

To sponsor the Turner family, go  https://www.justgiving.com/fundraising/turnerfamilyfocus10 or do your own challenge and set up your own JustGiving page at www.justgiving.com/chs

To find out more about the 10 Stay, go to https://www.chf.org.uk/Focus10K-update.html

Charity

Crawley firefighters undertake marathon walk in memory of fallen colleague

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Some of the team from Crawley Fire Station with the training mannequins.

Firefighters from Crawley Fire Station are preparing to make their way to the seaside on foot in memory of a much-loved former colleague.

But the 20 firefighters won’t be completing the walk to Brighton seafront on their own, as they will be carrying a few training dummies with them, weighing in at around 30kg.

They will be raising money for The Fire Fighters Charity and The Stroke Association in memory of former Watch Manager Simon Constable who passed away in April 2019 having suffered a stroke. Simon served with WSFRS for 29 years.

The crew have been busy training for the 30 mile walk, which they will complete on Saturday 8 August, and are hoping to smash their fundraising target along the way.

Green Watch Manager Neil Fairhall said:

“With it almost being the summer holidays, we thought what better way to raise some money for two fantastic causes than a jolly down to the seaside? Though I imagine after a couple of miles in carrying those training dummies, the walk will be anything but jolly.

“But the whole point of this fundraiser is to push ourselves, and hopefully raise a decent amount of money for The Fire Fighters Charity and The Stroke Association.

“Both charities mean a lot to us at Crawley Fire Station – The Fire Fighters Charity provides a real lifeline for serving and former firefighters in their hour of need, and The Stroke Association does some fantastic work to support those affected by stroke. Having lost Simon last year, this is extremely poignant for us as a watch and station, and we hope to raise a worthy amount in his memory.”

The challenge comes after all fire stations within West Sussex were challenged by Station Manager Phil Maynard to come up with innovative ways of raising money for The Fire Fighters Charity, which supports serving and former firefighters as well as their families in times of need.

Phil has set the county’s 25 fire station’s the ambitious target of raising £25,000 by the end of the year for the charity. Already, the East Grinstead crew have managed to raise £1,670 for the charity after climbing the equivalent of Mount Everest in the station yard.

To support the Crawley crew in their fundraising efforts visit: https://www.justgiving.com/team/Crawleyfirestation?utm_source=Twitter&utm_medium=team&utm_content=Crawleyfirestation&utm_campaign=pfp-tweet&utm_term=d18daf1ece7847a8b62aaeec665ad509 

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