A disabled boy died after his head became trapped, while he was in bed.
An investigation was sparked after the death of nine-year-old George Ellis.
The youngster had a syndrome so rare there are only 18 recorded cases of it in the world.
He died at his home in Marldon, South Hams on October 1.
His family claimed his life could have been saved for less than £150, as the disabled bed had a “dangerous large gap” at the side, which was raised as a concern several times.
But DevonLive reported his family alleged they were told to fill it with pillows and blankets.
It was only following his death the family discovered George could have been provided with a specially designed infill for his bed, priced £142.99, as entrapment can be a potentially fatal hazard.
His sister Jess, 23, said: “It’s horrific. We always knew George would probably die younger than most people, but it shouldn’t have been like this.
“If it had been a natural decline or he was ill we could accept that, but his death was very unnecessary.
“We believe £142.99 would have saved George’s life. The gap was an issue we raised several times with various different professionals and it was dismissed every time.”
She added: “This cannot happen to anyone else. If you have this bed, contact your occupational therapist and tell them about George and tell them you need the infill.
“Every single bed provider needs to know George’s name and they need to be supplying these beds with the infill.
“If this was a baby in a cot, there would be national outrage and the cot would be recalled.
“But because George was a disabled child, it is somehow less important and urgent. This needs to change.”
An inquest has not yet been officially opened into George’s death, but his interim death certificate gives the cause of death as “aspiration”.
His family want it added that this was due to inhaling vomit while he was trapped.
Torbay and South Devon NHS Foundation Trust has confirmed it is conducting a full investigation into George’s death.
Deborah Kelly, the trust’s chief nurse, said: “We know that George was very much-loved and we would like to express our deepest condolences to George’s family and many friends.
“Our thoughts are with them at this very difficult time.
“We are undertaking a serious incident investigation into George’s death and have invited his family to be involved in the investigation.
“We will continue to offer to support to George’s family throughout the investigation and a copy of the investigation findings will be shared with them in due course.
“George’s death will also be the subject of a coroner’s inquest and other investigations, including a Child Death Review and we will fully co-operate with all formal investigations and processes.
“Due to the ongoing nature of these investigations and processes we are unable to comment further at this time.”
George, was born with Hartsfield Syndrome and most children die at birth or shortly afterwards, but George exceeded all expectations.
The life-threatening rare condition is characterised by holoprosencephaly, an abnormality of brain development, and a malformation of the hands and feet called ectrodactyly.
George did get his therapy dog but due to issues which have now become the subject of legal proceedings instigated by the family, he did not get to keep him for long.
This year he underwent a 10-hour double hip reconstruction operation which he recovered from, and had been back attending school at Vranch House in Exeter.
Jess recalled: “This year has been a tough one for George because he was in and out of hospital for the first half of the year but he got through it fine. As he was getting pressure sores he was provided with a new pressure sore mattress in around May or June.
“There was always a massive gap in the bed and that’s what he got stuck in. Even if I had laid on the bed and rolled over I could have fallen through the gap.
“The side of the bed is also stretchy so even if you lean on it then it stretches. We were just told to fill it with blankets and pillows and it would be okay.
“He was quite a grabby and wriggly boy so he would grab at them to have fun with. He ended up in the gap every day.
“We think we may have been given incorrect mattresses for that bed. It was only after George died that I found out online about an insert that would have filled the gap and saved his life.
“It had never been mentioned to us so we don’t know something like that existed. If we knew we would have bought it ourselves.
“We are angry and heartbroken, but if we can help just save one person’s life we will feel a bit better.”
His funeral will be held on Thursday, October 27, it will be followed by a gathering at Meadowbrook Community Centre.
An online fundraiser has been launched to help George’s family give him the fitting farewell he deserves. So far it has raised £2,500.