Connect with us

Charity

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

Published

on

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

Three Bridges, Crawley Tesco store gives a helping hand to veterans in need

Published

on

Lee Matthews, former Queens Royal Irish Hussar.

British armed forces veterans who face hardship and distress have benefited from a military annual fundraiser, with a little help from a Tesco Crawley store.

Former members of the Queen’s Royal Irish Hussars met up at the 4th Worth Scouts Hut in Crawley to reminisce about past events and enjoy their yearly BBQ.

They also had a range of fundraising events on the day, raising £537, with all proceeds going to The Veterans’ Charity.

Throughout the pandemic, the charity has continued to deliver vital support to veterans and their families, including food shopping, essential household products and toiletries, utilities credit, clothing, and smartphones to enable continued communication and to prevent isolation.

Many of the items donated to the veterans’ fundraiser came from the Three Bridges Tesco Extra store, whose staff are keen supporters of the Queen’s Royal Irish Hussars’ annual event.

Martin Weathers, a Tesco staff member and fundraiser for The Veterans’ Charity.

Martin Weathers, a Tesco staff member and fundraiser for The Veterans’ Charity, was among those at the event, having served with The Queen’s Royal Irish Hussars.

He said:

“I’m very grateful to Tesco for their generosity. Our annual BBQ was extremely enjoyable and entertaining, and it continues the brotherhood that most people miss after leaving the Forces.

“Leaving service life can be a dreadful time, especially for those who have been in for a long time, and some may have associated physical or psychological problems such as combat post-traumatic stress disorder.

“This is why get-togethers like this are so important, and Tesco’s contribution to helping us raise funds for service-people in need is incredibly important.

“It helps to provide much-needed funds for The Veterans’ Charity, enabling it to supply things such as basic food shopping for our most vulnerable veterans who have fallen on hard times.

“This year has been the busiest ever for The Veterans’ Charity, with more than 540 welfare requests. These are often referrals from other charities, but some have been directly from struggling veterans themselves, and all of them were satisfactorily resolved within 24 hours of the charity being contacted.”

Tesco has a long association with the Armed Forces, dating back to Tesco founder Jack Cohen and is a signatory to the Ministry of Defence’s Armed Forces Covenant. About 300 Tesco employees are members of the supermarket chain’s Armed Forces Network, and the supermarket is one of the largest employers of reservists and former service personnel.

Matt Ayling, manager at the Three Bridges Tesco Extra store, said:

“We’re really pleased to be able to help the Queen’s Royal Irish Hussars. Its members are amazing people and we all have a lot to thank them for, so our store is always keen to assist them if we can.”

Continue Reading

Trending