Family and friends of a teen with a rare genetic condition are holding a fun night this week to raise awareness of his disorder.

Connor Connelly, 16, from Saltcoats suffers from MECP2 Duplication Syndrome, a neurodevelopmental disorder which causes a range of physical and mental impairments.

Mum Rhona said: “My son Connor has a very rare genetic condition. We are very lucky that he is still here.

“We’ve nearly lost him three times since October. We’re just so grateful he’s still with us. It’s all about living for the moment, focusing on what makes Connor happy.

“Children are strong little beings and the strength he’s got is amazing. ”

Connor, a former James McFarlane pupil, was first diagnosed with his condition at the age of eight after he started having seizures. Following the devastating diagnosis, Rhona decided to start up a charity, MECP2 Duplication UK.

This week’s fundraiser has been organised by Rhona, along with friends Jillian and Caroline Cameron, in support of the charity.

Connor’s sister Mhairi, 14, also recently did a presentation at Ardrossan Academy with her friends to raise awareness of the condition.

Rhona told of the moment when Connor was diagnosed: “We were absolutely devastated, we were numb, but since then I’ve gone on to form a charity providing support for families living with the condition.

“There are only about 40 children in the UK with MECP2 Duplication.”

Connor lives in Saltcoats with Rhona, Mhairi, his dad Andy, and brother Andrew, 13.

Rhona cares for her son full-time with additional help from the family and from organisations.

She said: “Connor has very complex needs. He needs 24/7 care. It’s all provided in the house. He gets support from Robin House Hospice and the WellChild team. We’ve got wonderful support.”

The fundraiser is on Friday, May 25 at Girdle Toll Bowling Club, Irvine, 7.30pm-12.30am. Children welcome. Entry is £5 /£2.50. Transport can be provided – please call 07747 574576.