The bereft mother of a "kind and pure" disabled boy has told of her repeated pleas for help from authorities before he fell to his death from a cliff during lockdown.

Sammy Alban-Stanley, from Ramsgate, was just 13 when he died in April 2020, leaving his parents, younger sisters and the local community heartbroken.

At an inquest in Maidstone, his mother Patricia Alban-Stanley said her son, who had Prader-Willi Syndrome (PWS) and autism, was courageous and inspirational, bravely facing what society threw at him despite the challenges he had.

But during the inquest, which is due to last nine days, she also revealed how he suffered frequent "dangerous and life-threatening" behavioural episodes, a symptom of PWS, which would see him lose control, be violent towards her, self-harm and attempt to take his life.

In an emotional statement, she explained how he had previously tried to drown himself in the sea, attempt to jump from a pier and out of a window, and run into traffic on a motorway, while she and others - sometimes his siblings or bystanders - would try desperately to restrain him.

Mrs Alban-Stanley said she had been struggling to manage it, particularly as he grew bigger, and was in desperate need of support at home, outside of school hours.

"These episodes were impossible to manage, the only way I can describe them is they were like seizures," she said.

"People who witnessed them said it was like somebody else entering his body and like he was in a trance. Often he couldn't remember them afterwards.

"The episodes scared and distressed him and he would often beg for help after as he could not control himself and it terrified him."

Mrs Alban-Stanley said she would sometimes be bitten on the hands and arms as she attempted to restrain him to stop him running into the road or towards other dangers.

But she said despite repeated calls for help from authorities, including Kent County Council and children and adolescent mental health services (CAMHS), she was continuously told he did "not meet the eligibility criteria" for extra support.

Instead she said she was privately funding therapy herself to try to help Sammy and was managing on just a few hours of help at home each week from the state.

After moving from Hampshire to Kent in 2018, Sammy was also out of school for a year which Mrs Alban-Stanley said was due to KCC removing his Education Health and Care Plan - a legal document for children with special educational needs - and insisting he should be in mainstream school.

However, in 2019 he got a place at Laleham Gap School in Ramsgate, which is for children with SEN, where the family saw him thrive and "fit in with a wonderful peer group".

While the dangerous episodes continued - with between three and six members of staff having to restrain him - she said the school was supportive and raised the issue of Sammy's "insufficient support" at home.

When Covid-19 hit and schools shut, Sammy - due to his condition which can cause respiratory problems - was told to shield and had to remain at home.

Mrs Alban-Stanley raised her concerns with KCC about him being at home and in particular the cliff at the end of her road in Ramsgate.

"No additional support was put in place to help me manage Sammy at home..."

"The reason I was worried was because during episodes he would run towards anything dangerous," she said.

"I remember saying I needed some form of emergency help, that I'd had to save Sammy's life many times recently, that the police were regularly attending and that the cliff was a risk.

"I was told nothing could be promised. No additional support was put in place to help me manage Sammy at home - I was left to do this on my own."

There were further incidents in March and early April 2020 when the police - who were called regularly to help during his episodes - had to attend on two occasions.

"Sammy's episodes were increasing in frequency as he was not at school and he was struggling to cope with the lockdown without extra support," she said.

"I explained to the police that the lockdown and lack of structure was having a damaging effect on his behaviour.

"He was growing and it was getting more difficult to hold him on my own to keep him safe and I was desperate for help."

Recalling the incident just before his death, she said he had been distressed waiting for bank cards for his new account to arrive.

She said he had woken early on April 22 and had an episode, with Mrs Alban-Stanley struggling to get him off her.

Her step-brother and her other children helped restrain him, but he was upset that he couldn't find a piece of paper.

"He was a disabled child and needed more care than I could provide on my own..."

Eventually some NatWest letters were found and the matter was seemingly resolved.

But she said she knows now that wasn't actually the case: "I last saw Sammy sitting calmly at the table with a piece of paper. I was lying down recovering from the incident. I did not hear him leave the house.

"The next thing I knew the police were at my house telling me what happened.

"After his death, I realised those letters were actually letters for me and so not the one's Sammy was looking for and I believe this caused the second episode."

Sammy was found seriously injured at 6.50am in Marina Road.

He was rushed to King's College Hospital in London but tragically died four days later from a traumatic brain injury.

"Sammy's episodes were so strong and became increasingly difficult to manage," Mrs Alban-Stanley said.

"Restraining him was a question of saving his life.

"I strongly believe if I'd been offered more support including at home when Sammy was up very early in the morning we would have been able to prevent this incident from happening.

"The only proposal to keep him safe was for me to call the police after an episode had begun.

"A general lack of understanding of PWS meant that Sammy was often referred to as being difficult or having challenging behaviours with the implication he could control it.

"Even in his short life Sammy made a real impact on all those he met..."

"In reality he was a disabled child and needed more care than I could provide on my own.

"I wanted everyone to work together to keep him safe, but I kept being told he didn't meet the eligibility criteria for support.

"At every point I was turned away by state bodies who had no understanding of his needs, portrayed me as an overwrought mother and never accepted when I repeatedly said that Sammy's life was at risk.

"Sammy fell through the cracks of the system because he was deemed not disabled enough to be awarded a proper level of care yet he was too disabled for me and my daughters to manage at home."

During proceedings, Mrs Alban-Stanley described Sammy as a beautiful soul who had deep integrity, standing up for what he thought was right.

"He was an absolute joy, he would have contributed so much to society and he shouldn't have been taken from us.

"I learned so much from him and our bond was exceptional.

"Even in his short life Sammy made a real impact on all those he met."

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