Brave schoolboy, 10, suffers from 'one in a million' condition that means falling asleep could KILL him
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A brave schoolboy suffers from a potentially deadly 'one in a million' condition that means simply falling asleep could kill him.
Benji Bowker, 10, stops breathing "the minute" he drifts off due to the rare condition, which affects about only 60 people in the UK.
His small body has to rely on the help of a machine to breathe.
The youngster, from Huddersfield, West Yorkshire, was also almost strangled by his umbilical cord in the womb, causing brain damage.
This has resulted in severe learning and social difficulties, his family say.
(Image: Huddersfield Examiner/MEN MEDIA)
(Image: GoFundMe)
He is currently unable to read or write properly and suffers from short-term memory loss, which means he struggles to remember things.
Benji was born with Congenital Central Hypoventilation Syndrome (CCHS), a condition so rare the family's GP had not even heard of it.
The condition affects the part of the youngster's brain which controls his automatic breathing, The Huddersfield Daily Examiner reports.
This means that when he falls asleep his body is unable to breathe without the help of a machine.
For the first two years of Benji’s life, his parents had to take it in turns being on duty as he slept in case of problems with the machine.
(Image: Huddersfield Examiner/MEN MEDIA)
(Image: GoFundMe)
They have since been able to get a nurse who now watches him.
The schoolboy, who has a younger brother, Daniel, six, and lives in Marsh, receives one-to-one support at Reinwood Junior School.
Because of his short-term memory loss, he often forgets how to tie his own shoe laces, his parents, Justin and Jana, say.
But following a decade living with the condition, there are now fresh hopes for the family in the form of a four-legged friend.
Justin and Jana are raising money for a medical assistance dog who will be able to keep guard over Benji while he sleeps and press a button with its paw to raise the alarm if something goes wrong with the machine.
The family are also raising £20,000 for stem cell treatment, which doctors say may improve the damaged part of Benji’s brain by as much as 60 per cent.
(Image: Huddersfield Examiner)
(Image: GoFundMe)
Justin, 49, said: “Anything we can do to improve our son’s chance of living a normal, happy life and fitting in with society has to be worth a shot.
“We hear about some people left with similar forms of brain damage that are completely ostracised from the world.”
The total the family need to raise comes to £31,000 along with the £11,000 for the assistance dog.
Justin, a project manager for a telecoms company, added: “We’ve been researching the possibility of stem cell treatment for a few months now. We have spoken to many different clinics around the world.
“Unfortunately, we are worried some of them are scams so we’re waiting until we’re confident we’ve found one that is reputable where the treatment has a good chance of working.”
(Image: Huddersfield Examiner/MEN MEDIA)
(Image: GoFundMe)
The therapy uses stem cells – blank cells which have the ability to transform into any human cell in the body – to regenerate as healthy brain tissue.
“We would love for Benji to have a chance of growing up and getting some qualifications, leading a normal life and finding a partner,” Justin added.
“The assistance dog will also really benefit him as pretty soon he’s going to be at the age where he doesn’t want a nurse watching over him at night time.”
The family are organising fundraising events and have already managed to amass £15,000 towards the appeal.
A charity night is being Berties in Elland in February, while Justin also plans to do a sky dive with the Red Devils next year.
(Image: GoFundMe)
Benji’s Night is on February 2 and tickets are £35 a head.
For booking information, see Benji’s Night – Raising funds for Stem Cell Therapy & a Medical Alert Dog on Facebook.
On a dedicated GoFundMe page, Benji's family describe how he was born by C-section because his umbilical cord was around his neck.
They say in a post: "Our 10 year old son Ben was born by emergency caesarian because his umbilical cord was wrapped tightly round his neck in the womb. This caused a certain degree of brain damage resulting in severe learning and social difficulties.
"He has the chronological age of 5 years and will not be attending mainstream school after primary level which is so sad.
"The poor lad has short term memory loss so remembering things he has learnt is fulitile. At 10 years old he still cannot read and write or even remember how to tie his shoe laces.
(Image: Huddersfield Examiner/MEN MEDIA)
"There is however, a treatment available to repair his brain damage similar to the treatment for Cerebral Palsy but it's only available in certain countries like Switzerland and it's also expensive."
They continue: "He was unfortunately also born with a rare and dangerous genetic condition called Congenital Central Hypoventilation Syndrome (CCHS ) where he stops breathing the minute he falls asleep.
"This could have also been a cause of some brain damage before he was diagnosed... There is no cure for that problem and he will suffer with it all his life but with Stem Cell Therapy he could definitely have a better life by repairing the damage caused to his brain."
They conclude the post: "Feel blessed if your children are healthy and thank you for taking the time to read this. Love, Justin & Jana."