Disabled teenager Sammy Alban-Stanley was just 13 when he fell off a cliff in his hometown of Ramsgate, Kent.
He died of his injuries four days later on April 26, 2020.
Prior to the tragedy, his mother Patricia Alban-Stanley, 55, had pleaded with Kent County Council for support because they hadn’t found a school for Sammy and his behavior at home was dangerously unpredictable.
Coroner Catherine Wood, who led the investigation into Sammy’s death, concluded that if his family had received the support they had asked for, it could have made a difference to his risky behavior and ultimately his death.
Since then, in its survey of special educational needs and disabilities in March this year, the government recognized that the current system for all disabled children is not working and published new plans to support families.
Here, Sammy’s sisters – Hazel, 14, Poppy, 12, and Holly, 12 – pay tribute to their brother and explain why families need to be heard:
‘It is the sawing and hammering in the early morning that we miss most about our brother Sammy. That, and the hugs.
He would rise with the sun and go into our yard to finish some carpentry. He had taught himself to make boxes. We woke up to the sound of drilling and the smell of sawdust.
It feels weird and sad that we will never experience that again.
Sammy was the oldest of the four of us. He had bright blue eyes and blond hair and looked like any other boy, but he had the rare genetic disorder Prader-Willi syndrome and autism.
Most of the time he was kind, creative and funny. But if things went wrong or his routine changed, he could go from nothing to ballistic in seconds.
We’d call these “episodes” – they were caused by his condition, not because Sammy was mean.
Sometimes it was because something was bothering him or because he couldn’t find something. He would suddenly become different, as if there were someone else in his body.
In the morning, if he couldn’t find something before he went, he would wake one of us and we would all have to search.
Sammy would get very physical and wouldn’t know what he was doing. Mama should hold him with all her strength so he wouldn’t hurt herself or any of us.
He would pull at her hair and kick and punch. There was a lot of shouting.
We all tried to calm him down, but if that didn’t work, we had to call the police. Usually Hazel was the one to call, because there was rarely another adult at home.
In total, the police were called more than 29 times. Every time they came they said they would ask our congregation to organize professional help for Mom. They could see we needed it.
The first time Hazel called the police, she was only nine. She learned exactly what to tell them by heart.
She would call and say, “Hi, I have a disabled brother and he hurts my mother.” They would ask the same questions. Where are you? Are there any other adults with you? Hazel should say no.
The twins would run to the neighbors.
Sammy got used to the police arriving, we sometimes saw him handcuffed.
He would be happy when he came home, because often the police took him to the hospital and he came back with a hug.
Sometimes he had an episode in our car and would try to grab the steering wheel or open the door if we were driving fast. That was scary.
We weren’t allowed to have friends because it wouldn’t be fair for Sammy to have an episode.
We never really talked about our brother with our friends, it would be hard for them to understand. Even some people in our family didn’t understand what it was like.
Before Mom and Dad split in 2012, Hazel and Sammy started at the same elementary school, although he was in a different class.
She can recall seeing him make an episode and being taken out of his classroom into a hallway when he was upset.
Hazel knew him better than anyone and asked the teacher to take him to the library where it was private and where he would calm down better, but they said he would remove shelves.
Sammy liked routine. He always ate healthy meals to keep his weight down, because Prader-Willi makes people gain weight easily. He always ate different meals with us—always five things on his plate—and at different times.
He hadn’t been to school for a long time because no place had been found that suited him, that was not fair of him. He often cried about it. He eventually went to a special school.
Mama asked for professional help so often because his episodes could be dangerous and she needed another adult in the house, but she was ignored.
Life with our brother was different – it was stressful and Merry.
Sammy was energetic and active. In winter he would swim in the sea. He loved the beach and biking with all of us or walking in the woods nearby. However, he also suddenly became very tired, so we could never get very far.
He loved playing Minecraft with us and together we built many different worlds.
We looked up to Sammy because he was so brave. He would be the first on a scary ride at Dreamland theme park in Margate and he would get rid of snails and spiders for us.
If we were too shy to ask for directions, Sammy would. He talked to everyone and adults always said how sweet he was. He was very polite and wrote thank you letters to everyone.
He was always proud and protective of us. If one of us was sad, he would notice and hug us. He pumped up the tires on our bikes when they were flat. He always made mommy gifts, like sewing dinosaur toys or pretty bags.
The morning he fell off the cliff, he woke us up at 6:10 AM with an episode because he couldn’t find a particular piece of paper.
We helped him find it, but later he ran out of the house without anyone knowing. It turned out that the piece of paper he found was not the right one.
He went to the sea at the end of our road, climbed the cliff railings and fell onto the path below.
We didn’t know he was gone, we were woken up by the police who brought us the news.
They entered our house through the door that Sammy had left open just after 7 a.m. to say that a boy had fallen at the bottom of our road. One of them recognized our brother from being called home a few weeks earlier when Sammy had another episode.
He was in intensive care for four days. While Mama stayed by his bed, we went to our father’s house in Surrey.
We once went to see Sammy in the hospital and gave him hugs. The next day Mom and Dad told them he had passed away. We felt so deeply, deeply saddened, we just wanted to be with him.
After our brother died, Hazel felt sad when she found a map of his. It read, “Dear Hazel, I love you and thank you for taking care of me, Sammy”. He had made a drawing of a dinosaur.
After Sammy’s funeral, we wrote in books to remember him. We promised that we would help other families who are going through this.
When we are older, we want to build a school for handicapped children and teach them meditation to calm them down when they get upset.
We want disabled young people to have a better life, for their families to have the support we never got with Sammy. Above all, we want families desperate for help to be heard.
We wish we could say “I love you” to Sammy one last time and that he would come back and make our family complete again. We are concerned that people may forget him, and are angry that he died so young.
We will always miss him. Our lives will never be the same again.
We don’t want any other kids to die like Sammy.”
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