Benji Bowker is quite literally one in a million.
The 10-year-old from Marsh has a condition affecting approximately just 60 people in the UK. He was almost strangled by the umbilical cord in the womb, causing serious brain damage.
Doctors diagnosed him with Congenital Central Hypoventilation Syndrome (CCHS), a condition so rare the family GP had not even heard of it.
The condition affects the part of Benji’s brain which controls his automatic breathing, meaning 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, parents Justin and Jana had to take it in turns being on duty as he slept in case of problems with the machine, until they were able to get a nurse who now watches him.
The youngster is also unable to read properly, receiving one-to-one support at Reinwood Junior School, and has short term memory loss, often forgetting how to tie his own shoe laces.
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%.
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.”
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.”
Benji has younger brother, six-year-old Daniel.
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.
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.
Anyone who wishes to donate can visit the family’s Go Fund Me Page here.