Sussex family take part in incredible charity challenge to support son with rare genetic condition

A teenager with a rare genetic condition affecting only 30 people worldwide has joined with his family to complete an amazing challenge to help a Sussex charity.

Mikey Turner 2 SUS-200806-125512001
Mikey Turner 2 SUS-200806-125512001

Mikey Turner, 17, has lived at Chailey Heritage Foundation, situated between Lewes and Haywards Heath, for four years.

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.

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

Mikey Turner 1 SUS-200806-125430001

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

When the charity organised a day of fundraising, Mikey and his family from Rusper, between Crawley and Horsham, decided to join in.

In fact, the whole family rose to the challenge – even sister Zoe, who is 9,500 miles away, planting melons in Australia.

All the family challenges were completed on Sunday May 31 - the original date of the charity’s annual fundraiser Focus 10k, which could not take place due to Covid 19.

Mikey’s two challenges were to be in his ‘stander’ for 10 minutes and also to complete a 5k bike ride onsite at Chailey Heritage.

Mum, Jenny, completed two 5k runs in one day, despite having never run that far before while Dad, Andrew, ran 10k and cycled 100 miles around the Sussex countryside.

Sister, Zoe in Australia, ran 5k and also planted 5k of melon seeds on the farm where she is working. Sister, Gemma, completed ten one-hour activities, including cycling, walking, cross trainer, Pilates and yoga.

Mum Jenny said: “After a busy day, as a team we achieved 162.4 miles, burned 10,000 calories, 26.5 hours of exercise and 1,500 melons planted.

“We are all elated and exhausted. A big well done to Mikey and Chailey Heritage who have inspired us all. And finally, a huge thank to all our supporters.“

The family has raised almost £4,000 for Chailey Heritage Foundation, which will be matched pound for pound by Focus Group, sponsors of the Focus 10k, based in Shoreham.

Chailey Heritage is a very special place for the family because it’s been home to Mikey now for four years. The family say they do an amazing job looking after him.

Jenny 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.

“We regard Chailey Heritage as an extension to our family”.

You can still donate.To sponsor the Turner family, go or do your own challenge and set up your own JustGiving page at

To find out more about the 10 Stay, go to

Chailey Heritage Foundation is a charity providing education, care and transition services to children and young adults with complex physical disabilities. Their mission is to give disabled children and young adults every opportunity to pursue their fullest potential.