IT has been another tough 12 months for Penketh youngster Ethan Connolly, who needs a tracheostomy to help him breath.

But now the 11-year-old's family are hoping there is light at the end of the tunnel.

The former St Vincent’s Catholic Primary School pupil suffers from rare condition lymphangioma which creates cysts that block his throat.

Fundraisers have helped the family travel to New York and Berlin on a number of occasions for operations to remove them after the NHS refused to pay for treatment.

The youngster, who is set to start at St Gregory's in September and recently celebrated collecting his first dan black belt, is now waiting for a sleep study at Alder Hey to see if the tracheostomy can eventually be removed from his throat.

Mum Karen, aged 43, said: "It can still be very hit and miss as he had an operation earlier this year in Berlin on his tongue that took a long time to recover from and meant he could not eat properly for weeks afterwards.

"The next thing we're waiting for is a sleep study to check how he is breathing at night time.

"We're always looking to see if he's ready to have his tracheostomy taken out but he will also need to have his tonsils taken out so he has as big an airway as possible.

"It's just a case of having to wait and see as if it doesn't look good after the study he might need to have more work done on his airway.

"The condition is so unpredictable as he can go to sleep some nights fine and others will wake up with his pillow covered in blood.

"But touch wood it's under control at the moment."

Fundraising continues for potential further operations with Ethan's dad Kevin recently taking on the three peaks with friends to raise cash in the hope of reaching a point where Ethan can enjoy a bit more 'normality'.

Karen added: "He always has to be with a trained adult at the moment who can use emergency equipment so he can't just go out on his bike with his friends.

"But he's still really active and does street dance as well as karate and we were really proud of him getting his belt as he worked so hard.

"He's absolutely desperate to go swimming and it's all he's ever said he wants to do when the tracheostomy comes out so fingers crossed when that happens we will be at the baths all the time."

Read Ethan's blog or donate via ethansjourney.co.uk.