BRAVE youngsters battling an ultra-rare condition which will leave them blind are hoping for a treat before their world goes dark forever.

Joshua and Sebastian Burgess are living with a genetic condition so rare there are only 16 recorded cases in the world.

Mum Kristel was left devastated when Sebastian, eight, was diagnosed with Retinitis Pigmentosa, which causes progressive vision loss and ends in complete blindness.

But the situation worsened when his brother Joshua, 12, was also told he had the condition.

Following tests, it was discovered the boys also likely have a linked condition, Primary Ciliary Dyskinesia, which effects hearing, sinuses and lungs.

There are few known cases, with a prevalence of less than one in one million.

Kristel, 36, of Walton, said: “It is really difficult.

“Once we found out in April about my 12-year-old son, he has had visual field tests to see how much peripheral vision he’s got.

“He has ten degrees left. With RP they typically lose sight in their teenage years.

“There is no treatment and no cure.We are trying to make as many memories as a family as possible before they lose their sight and their world goes dark forever.”

Kristel’s home life is a challenge, as her two other sons, Liam, 18, and Oliver, six, are autistic.

She left her job at a pre-school in order to look after her boys.

Kristel even trained as a child therapist to make sure she can provide the best emotional support possible.

Her husband, Peter, works full time as a tree surgeon to make ends meet.

She said: “It has been a nightmare, it is constant hospital appointments at five different hospitals all over the place.

“I had to leave my job last year

because of hospital appointments.

“They needed support with their emotional well-being.”

The brothers share a love for dancing, and both attend Stagestruck Academy, in Frinton.

Their kind-hearted teacher Joeley Bishop was so touched by their plight she decided to do something to help.

With the help of her best friend Megan Crabbe, she decided to summit Mount Snowdon, in Wales, to raise enough cash to give the two boys a treat and make some memories.

Together, the pair have managed to raise £4,000.

Kristel hopes to use the money to take the boys on a dream trip to Disney World.

She said: “They have given the most amazing support possible, I want to thank them from the bottom of my heart. Sebastian is still blissfully unaware as he’s still so young.

“Joshua is far more aware - he makes comments about whether he needs to learn braille.”

To donate to the boys’ cause, visit