TOTAL RAISED: £56,827
“We know Robert is in safe hands”
Pam Turner, 60, from Bury tells how SeeAbility helps her son, Robert, to make the most of his life
Pam Turner was in her twenties and working for a service supporting children with eye conditions when she first came across the condition Batten disease. “I remember asking my former boss what it was,” recalls Pam, 60. “She told me, ‘It’s a diagnosis you never want to hear.’ I couldn’t have imagined I would be in the position of discovering how true those words were years later, when my son, Robert, was diagnosed with the condition.”
Robert, now 32, first started experiencing symptoms when he was seven years old, when he had trouble seeing the board at school. “We took him to the optician, who referred him on to the local hospital for more tests. We were told Robert had retinitis pigmentosa, a genetic condition affecting the cells in the retina, causing permanent changes to vision.”
Within a year, Robert was registered blind. “Luckily, he has always been very resilient and took everything in his stride. He loved learning Braille because it was like a secret code, and he was the first child using Braille to go through the education system at a local school.”
After completing his GCSEs, Robert decided to study as a boarder at New College Worcester, a college for young people who are blind or partially sighted. While there, he experienced his first epileptic fit. “He seemed to be doing OK, so we weren’t too worried. However, a few months later, he had another seizure while we were on holiday in France and he was put on epilepsy medication straight away.”
Back home, Robert was given tests and officially diagnosed with epilepsy. “Not long after, he began experiencing quite serious hallucinations and despite havingalways been very intelligent, he started to struggle academically. We had to drive down to rescue him quite regularly because he was really struggling with the hallucinations.”
After three years of college, Robert couldn’t manage any more. “We had a package set up at home with some fabulous carers and he enrolled at the local college.”
However, over the next few months, his mobility started to decline. “He stooped quite a bit and would sometimes just sink to his knees when he was walking, though we had no idea why. His epilepsy was also getting worse so he ended up on lots of different medications, but none of them seemed to be bringing the old Robert back.”
Eventually, when Robert was 22, he was sectioned for nearly 12 months, as his doctors believed his symptoms could indicate a mental health condition. During this time, a friend of Pam’s family who had previously worked as Robert’s mobility officer said she thought Robert could have Batten disease – a life-limiting genetic condition with symptoms including seizures, visual impairment, decline of speech and loss of motor skills.
“She recommended we speak to Sarah, the manager of Heather House, a residential home in Tadley run by SeeAbility for people with juvenile Batten disease and other complex conditions. We phoned her up and she asked lots of questions, then said it was highly likely it could be Batten disease. We didn’t want to believe it.”
When Robert was 24 years old, his neurologist ran some tests which confirmed he had the condition. “In one way we were relieved to finally have a diagnosis which made sense of all the symptoms, but it also completely ruined our lives. As a parent you sort of have a plan mapped out in your mind for your children, so to be told they’re actually going down a completely different road – and there’s going to be an end to that road much sooner than you expected – is devastating.”
Pam and her husband, Gary, asked for Robert to be put on the waiting list for Heather House. “We realised we could either fall to the floor in a heap or get up and face things. We said, ‘Right, what do we need to do?’ and the first thing was to get him into Heather House.”
Twelve months later, they got a phone call to say there was a place available for him. “We struggled with the prospect of him living so far away, but we knew it was for the best. We had been to visit and knew immediately it was the right place for him. The facilities were second to none and there was just a feeling of calm and happiness that hit us when we walked in.”
Since Robert’s move to Heather House, Pam has been thrilled with the decision. “Robert is in a wheelchair now and fully reliant on the staff for everything, but nothing is too much trouble for them. The chef there knows what he likes and is happy to prepare his favourite meals, and the staff also help him to take part in lots of activities.
“He has hydrotherapy and physiotherapy sessions, and they do relaxation, music, film nights, arts and crafts, baking and planting in the home’s beautiful gardens – his life is so busy. The staff and residents have also become like an extended family and he loves having a laugh and joke with them. Even though he’s got a very limited vocabulary, he will just come out with one word and have everyone in stitches.”
Pam and Gary regularly visit Robert at Heather House. “Quality family time is very precious to us, and we’ve had some fabulous days there. We know Robert is in safe hands with his care so can just relax and be Mum and Dad, which is amazing.
“When Robert first moved there, we were told if he lived to 30 we would be very lucky, but he has surpassed those expectations, which I think is down to their exceptional management of medication, people and the environment – the whole package. Since moving there, it feels like he has finally been able to start living his life. They have given him purpose, joy and laughter, which is just incredible to see.”
SeeAbility – the facts
- Registered as The Royal School for the Blind, SeeAbility is one of the oldest disability charities in the UK and has pioneered specialist support for more than 200 years.
- SeeAbility works with individuals to realise their potential and help to fulfil hopes and ambitions.
- The charity is launching a Juvenile Batten Disease Outreach Service to bring together a range of skilled medical professionals, enabling them to share and use their expertise and understanding of the disease to improve quality of life for young people with JBD.
- The Outreach Service will be based at Heather House– SeeAbility’s world-leading specialist nursing care home in Hampshire for young people with JBD – and will be delivered in partnership with the Batten Disease Family Association.
- Visit seeability.org for more information.
The Candis Big Give
The £56,827raised in The Candis Big Give will go towards a new outreach service at Heather House for people with juvenile Batten disease. The new Outreach Liaison Nurse will support families with advice, training and signposting, and the charity will also provide an outreach clinic four times a year, run by a team of skilled clinicians and professionals with a good understanding of the condition.