“We smile at the very special memories we made in those last ten days: recreating holidays, playing Rob’s favourite music, and setting up the pub in his room.”
Pam Turner whose son Robert died at the age of 33 from CLN3 Batten disease tells of their long road to diagnosis and how they made a pact to live without regrets.
There’s only one Robert Turner
21 July 1986 – Robert was a beautiful baby, snow white hair and clear blue eyes. He hit all his milestones early and could read before he went to school. He had a thirst for knowledge, loved a good puzzle and terrible dad jokes.
We can do this
We noticed he was holding his reading books closely and sitting really near to the TV, we flagged this with school and they too had concerns, he was five years old. We decided he’d need glasses but after a visit to the optician we were puzzled when he referred us back to our GP as the prescription would be very mild and he wanted to just check there was nothing else going on. Our GP noticed some pigmentation at the back of Rob’s eyes and referred us to Manchester Royal Eye Hospital.
And so the worrying started.
Our biggest concern was he may need an operation – little did we know.
The eventual diagnosis was a degenerative eye condition called retinitis pigmentosa. This was the first in a long line of misdiagnoses.
Our biggest concern was he may go blind and not be able to drive a car – we had no idea!
Robert got glasses. His sight continued to deteriorate, he learned Braille and touch typing. He joined the chess club at school early as he could play when he was six. We can do this, he can do this, we thought, and he did!
Rob became the first Braille user to go through mainstream primary and secondary education in our borough of Bury, he had superb support from the Vision Support team and a wonderful support assistant called Mrs Turner (no relation!). He achieved five A-C grade GCSEs, featured on the front page of our local newspaper and was accepted at a specialist residential college in Worcester to study for two A-levels.
Things started to unravel.
He loved college; the students, the tutors and the support staff. He threw himself into it, he loved the independence and the social life. He went skiing, rifle shooting, windsurfing, canoeing and had the experience of driving a car – well obviously our concerns were unfounded!
But something wasn’t right. He became unsettled, depressed, the work was too difficult, staff reported he began to act strangely, his mobility dipped, he walked with his knees permanently bent. We flagged it all, the medics said he was depressed and medicated him.
Aged 17 he had his first tonic-clonic episode. We were told ‘Everyone can have one fit in their lives.’
During a routine appointment with his psychiatrist, Rob had a major meltdown. He was sectioned, detained, we had no idea what the hell was happening. We were told they suspected it was schizophrenia.
Our biggest concern was; would he ever come out? – Oh, so little we knew.
He did come out. As one very clever doctor suspected, it was a form of epilepsy that had accompanying hallucinations. Robert was referred to a neurologist, he had tests. Whilst waiting for the results, we all went on a family holiday to France.
There, Robert had his second tonic-clonic. We travelled with him in the ambulance to Arras hospital. Our high school French was sorely tested, but Rob’s consultant spoke English. He was adamant that he would not let him leave unless he started on epilepsy meds. We helped his secretary type the dictated letter to Rob’s consultant in England.
Our biggest concern was; what if the meds don’t work?
No one joined the dots
Rob was referred, this time to a neuro-psychiatrist. It cannot be said that we Turners did not get very good value out of the NHS!
In October 2005 Rob made the supported decision to leave his college place and come home. He couldn’t be left, we had no support package, I was off work for three months whilst I ‘negotiated’ with Social Services. Rob got home carers, he loved the interviews which went something like this….
“How old are you?”
“What’s your favourite football team?”
“Do you like Quizzes?”
Our biggest concern was – what if this doesn’t work? It did. We had fantastic carers.
Robert attended outpatient appointments at a Birmingham Hospital for six years. For six years he was tested, he was put on various medications that were tweaked and recorded, his health deteriorated. We were constantly asked, “Have you got the old Robert back?” Our reply was always – “NO.”
Then one particularly low day I said, “He’s never coming back.”
Robert never complained, he rarely asked ‘why me?’ He just got on with it, and so did we.
Our biggest concern was – his deteriorating health.
He frequently refused medications, he would stop eating and drinking, he had hallucinations. He ended up being sectioned two further times in his life. Yet despite flagging up all these concerns, no one joined up the dots.
After spending almost a year in our local psychiatric ward, with our twice daily visits, taking him out to places and home frequently, and also having his regular carers with him on the ward (the manager was an absolute legend), Rob became so ill that he had to go to the medical side of the hospital.
I’ll skip the next part of the story, but we did make the decision for Rob to have a peg fitted – a feeding tube that could also take his medication – that was the first best decision we made.
A very late diagnosis
Meanwhile, genetic testing was agreed (Rob had a new neurologist now) and on 11/11/11 our own armistice was agreed as we were told Rob did indeed have juvenile Batten disease. We already knew in our hearts, the diagnosis had been bandied about for months.
Our biggest concern was; how much longer did we have left with our boy? He was 25. It’s an understatement to say it was a very late diagnosis.
Our house was not adapted, we had no suitable transport, the thought of battling to get everything Rob needed to stay at home was crushing. The decision of where Rob needed to live was taken out of our hands.
We had already been in touch with Sarah Kenrick, the manager at Heather House (a specialist home for young people with CLN3) and cried on her shoulder as we realised it might be an option to let Rob live there. Gary, Claire (Rob’s sister) and I went to visit. It felt right, it oozed happiness. The residents were involved, active and vocal, we noticed the tiny things the staff were doing; moving the hair out of someone’s eyes, joking with people, discretely adjusting clothing, making someone more comfortable. We made the massive decision – it would be Robert’s final home.
Rob spent the next 12 months in a lovely residential home near us, caring, lovely staff but it wasn’t ideal. Then the phone rang. It was Sarah with the offer of a place. I couldn’t accept it, I needed more time, how did I need more time when 12 months had gone by already? Sarah couldn’t believe it; no one had ever refused a place, and here was I a soggy mess, um-ing and ah-ing on the phone.
My very good friend asked me why I thought Rob should be at home aged 26? He should be in his own place doing his own thing! She was right.
We phoned Sarah the next day and on 12 November 2012 Robert moved into Heather House. We stayed with him for a full week in the lovely guest suites that were available for us and made it possible for us to visit him every two weeks for the next seven years.
Our main concern was – what if he hates it? We only had a plan A, no plan B for this move. By the time he moved in he needed 24 hour care.
Well, Plan A worked like a dream. OK, Rob didn’t say a word for about five weeks, and sent us all into a spin, but once he settled the staff couldn’t shut him up! He adored it there, and the staff adored him. He spent a very, very happy seven years there. The staff were taught how to say “Bloody ‘Ell” in a northern accent – Robert being the token northerner – and they taught him how to be happy again. They also taught us how to treat him as the adult he was. Did we get the old Robert back? We certainly did! The staff were amazing, they supported Rob and supported us. They became our Tadley family. They still are.
We believe Rob’s life was extended purely by the level of expert care he received and the peace and calm of the beautiful setting.
It had been our second best decision.
The Batten Bus
We felt we had been on the wrong buses for years, so we got off and embarked on the Batten Bus. We sat at the back, all of us; Gary, me, Robert and Claire. We knew the destination, we just didn’t know the other people on the bus. Some of them were nearer the doors at the front ready to get off. We got to know those people very well and they helped us enormously. They had the tips and tricks, they forewarned us of the bends in the road and the big potholes, but they also pointed out the beautiful things to enjoy along our way – and they introduced us to the most caring of people and we learned how to be parents once more.
Robert was a lovely man, he charmed everyone he met. He loved to sing (Oasis and Queen), he loved a quiz, he roared laughing at The Bradshaws (look it up, it’s northern) he loved his family, he loved to be told how handsome he was. He definitely loved his food and could be heard shouting ‘Prawns!’ whilst someone made him a prawn cocktail for breakfast. He had patience (sometimes!), determination and a smile that would melt the hardest of hearts.
Ten glorious days of sun
And so we moved up the bus, until one day we all ended up sitting at the front, looking at the people behind us, and realised that we were the ones listening to others and offering our tips.
Then the day came for us to leave the bus.
Our biggest concern was- what if Rob has to go into hospital?
Well he didn’t. Rob was 33, and in September of 2019 we had ten glorious days of sun with our glorious boy. We laughed, we loved, and finally at peace, we lost our lovely Robert, Rob, Bobby, Bob the Rob, Mr Turner.
The day after, it rained.
I can honestly say that looking back we smile at the very special memories we made in those ten days: friends coming to recreate the raucous holidays of old, eating and drinking and playing Rob’s favourite music, with Rob reclining in his bed like a king in the lush gardens, eating prawn cocktail. Recreating the pub in his room, as he asked to go and we thought they might struggle to get a hospital bed near the bar.
We chose the no funeral option. It was too painful, we didn’t want the sadness. We couldn’t stop it – of course – it came anyway. But it wasn’t the emotion we wanted for Robert. We wanted happiness, the good times, the fond memories. So we booked a celebration day at Heather House. We ate prawn cocktail and chocolate cake in his memory and we opened Rob’s Book; a collection of the best of times, the funniest moments, the just plain daftness, all those memories just poured out of those who loved and cared for him.
There was only one Robert Turner.
During his time with us, he was the poster boy for The National Library for the Blind (no longer in existence, but now run by RNIB) and raised nearly ¾ of a million pounds for them. He went on the radio with (Lord) Melvin Bragg as part of that fund raising and also on TV. He saw the making of his very favourite program; The Crystal Maze, and received a coveted crystal for it, which now lives with his lovely sister Claire and her lovely man Alex. It is positioned to catch the sun in the afternoon, and as it sends out hundreds of tiny rainbows around the room; Claire will say, “Bobby’s here.”
To be told you will lose your child is the worst thing that can happen to a parent, it’s devastating, your whole world falls apart and It’s hard to stop thinking about the non-future. But you have to live in the present and celebrate every time you hug, hold their hand, share a joke or just be with them. We made a pact that when we got to the end of the road we would look back and have no regrets. We have none, we all did our best. There is hope though, which although too late for our Robert, shines for some children with other variants of this dreadful disease, and all the families need support to travel on the bus, even those that have now disembarked.