THE MUM of a Cradley Heath boy stricken by a cruel disease is trying to raise awareness to aid research into the condition as it robs her of her child.

Regan Nash has mitochondrial disease MTT1 - his strain of the degenerative condition is so rare that he is one of only two people in the world to suffer from it.

His mum Melanie Morris set up Facebook site Regan's Fight for life with Mitochondrial Disease - where nearly 2,000 followers see regular updates into how the brave youngster is doing.

Regan, who was given just nine months to live at birth by doctors, was only given his official diagnosis last year.

The ten-year-old, of Norwood Avenue, has formed a bond with firefighters at Haden Cross Fire Station - where a fun day will be held on Sunday September 15 to raise money to help the family buy specialist equipment.

Melanie said there is very little known by the general public about Mitochondrial Disease and that the family - stepdad Craig Lowe and siblings Kai Nash aged six and Laci Lowe, aged four - are cherishing every moment they have together as Regan's health declines.

She said: "We're watching Regan die slowly.

"I suffer from terrible anxiety as I'm scared of losing my child.

"There's no cure, he's just on medication to make him as comfortable as he can be for the time he has with us.

"Regan never stops smiling, despite everything he has to go through.

"He's got a wicked personality - he will laugh at anything."

On the Facebook page Regan states: "All I have ever wanted is to be 18, drive an orange car and feed a panda as I love pandas.

"Please follow my page, support me and help raise awareness for mito."

Melanie said Regan is 98 per cent affected by the genetic condition, which has taken over almost all of his brain. He has severe development delay, twisted legs, balance problems, very weak muscles, spasms and cramps, speech problems, epilepsy and autism.

He uses a wheelchair, his right side is losing all mobility and the condition is now attacking his eyesight.

Firefighters from Haden Cross gave Regan a huge boost when they visited him on a hospital stay.

Dominic Rose, blue watch crew commander, said; "Regan's been down to the station a few times as he has a fascination with firefighters and fire engines!

"When he's here it really seems to lift his spirits. We held a fun day here last year for him and are doing another one in September.

"We will do anything we can to help him, because he's a lovely boy and they are a great family."

The Lily Foundation is the UK's leading charity dedicated to fighting Mitochondrial Disease. It has been backed by comedian Peter Kay who has raised £34k for it.

Melanie said she and her two other children, who attend Timbertree Academy, also have the condition, but in much less severe forms, and show no outward symptoms.

For updates into how Regan is doing visit the Facebook page Regan's Fight for life with Mitochondrial Disease.