Northampton family’s appeal to raise £400K for treatment to help 10-year-old son ‘get back to the boy he used to be’

A Northampton family is appealing for help from the community to raise £400,000 for treatment to help their 10-year-old son ‘get his life back’.

Beau Cameron, who lives in Grange Park with his mum and dad Samatha and Rich, became ill at the end of last year when he started to suffer with chest pains.

By March this year, he was unable to walk, talk or eat independently and had to have 24 hour care and be fed through an NG tube (nasogastric tube).

As the youngster deteriorated more, medical professionals struggled to determine the cause, but the family raised more than £4,000 for a stair climber to help with Beau’s care, thanks to generous donations.

In August this year, Beau was eventually diagnosed with Pervasive Arousal Withdrawal Syndrome (PAWS), which although still extremely rare, is more common in children than adults.

PAWS essentially means Beau’s body completely shut down. The condition usually arises as a result of a trauma or illness and can be treated.

Samantha said: “PAWS is something that has been around for years and is very rare. It is a life threatening condition.

“It’s scary because all the information out there is old and dated. There are no new resources out there.

“The staff at Northampton said they’d never come across it before.

“His body basically shut down. He hasn’t walked since March and all he does is play on his Switch and watch YouTube videos.

“We can’t take him out as he doesn’t like it anymore, like he doesn’t like anything he used to be associated with before this happened.”

Now that a diagnosis has been found, Beau is on the waiting list for in-patient treatment at two specialist hospitals.

However both hospitals have a 12 to 24 month waiting list, which the family is concerned about as they do not want their son to deteriorate further.

Beau’s parents have found a private clinic where he could live for at least a year and receive specialist support including re-learning to walk, talk and eat.

Samantha added: “Following the diagnosis, it has been easier for me as I know there is an end in sight, but beforehand it was scary because nobody knew what was going on.

“But we’re still in a situation where you can see your child going through something every single day and not we're not able to do anything about it. It’s heartbreaking.

“Beau will need this treatment and rehabilitation to get him back to the boy he used to be.

“He has already missed a year of his life and two years of education and it’s really scary to think he will miss more years.”

The private clinic will cost a minimum of £400,000 for a minimum of a year, but the family is determined to raise the money to give Beau the best shot at recovery.

“The NHS cannot refer him for this treatment as they don’t have the funds to pay for it, but there is a clinic opening in Derby by the end of the year where Beau could have a bed if we can pay,” Samantha continued.

“A £90,000 deposit will secure the treatment for three months, but we don’t want to do that if we haven’t got the money to pay for the full year that he’ll need.

“We are always there for others so it’s one of the things we’ve found difficult; to accept help from other people.

“But my friends came to me and said ‘we can do this, we will all work together’.

“Someone said if 40,000 people donated £10 we will reach the target and when you think of it like that it feels doable.”

Friends of Beau’s parents are working hard to find companies who may offer a donation and a GoFundMe has also been set up for members of the community to help. Donate here.

Samantha is also thanking anyone who donated to the fundraiser for the stair climber, the new fundraiser or who have shared Beau’s story to raise awareness.