Living beyond expectation – A letter from Pam and Gary, Robert’s parents
Dear SeeAbility supporter,
To be told you’ll lose your child is the worst thing that can happen to a parent. Your whole world falls apart. We were told by a neurologist that if our son Robert, who’d just been diagnosed with a rare degenerative disease, lived to be 30, he’d be doing well. Robert passed away when he was an unbelievable 33 years old. We know in our hearts his life was extended by the level of expert support and the beautiful setting at his SeeAbility home.
So, where did it all start?
Robert was born with snow white hair and blue eyes, and hit all his milestones early, including reading before he went to school. He found enjoyment in sport, puzzles, and terrible dad jokes – just a healthy, fun-loving boy.
When he was five years old, we noticed him holding his books very closely and sitting near the TV. As typical parents, we’d say to him, “you’ll ruin your eyes if you sit close to the TV.” Little did we know all that was ahead of us.
Robert’s school also voiced concerns and then a seemingly routine optician’s appointment resulted in a GP referral to Manchester Royal Eye Hospital. And so, the worrying began.
A long line of misdiagnoses...
The first in a long line of misdiagnoses was a deteriorating eye condition. Our worry turned to the fear that Robert may lose his sight entirely.
Robert started wearing glasses, but his sight continued to get worse, meaning he had to learn Braille. He picked it up very quickly and became the first Braille user to go through mainstream primary and secondary education in our borough.
From school, Robert went to college, where he started having seizures and hallucinations. At just 17 years, he was sectioned and placed in a mental health unit linked to what they thought was epilepsy, and a few years later, paranoid schizophrenia.
No-one knows anyone as well as a parent knows their child, and we didn’t believe for a second that our son had schizophrenia. We fought to be referred to a neurologist at a different hospital.
Finding the right support
Finally, at 24 years old, Robert was diagnosed with juvenile Batten disease, a rare, life-limiting, degenerative condition. The neurologist told us it would be a miracle if he lived to 30. While devastated by the news, we clung onto the fact that we might have six more years with our boy. Our priority became finding him somewhere to live, as he was already using a wheelchair and our house wasn’t accessible.
From our first call with SeeAbility, when we were made to feel like their only priority, to our first visit to Heather House in Tadley, where the overwhelming feeling was happiness, we knew we’d found the place our son needed to be.
"The relief we felt when Robert moved into his new SeeAbility home was instant."
The staff there were brilliant – they had all the time in the world for our son. He received the personalised support he needed, and they included him in everything.
What we loved most is that they treated him as an adult, giving him choice and independence. He thrived as a result, and it was lovely seeing him putting on weight again – we never realised how ill and thin he’d become before SeeAbility.
"SeeAbility’s mission is to champion and deliver ambitious support and preventative services alongside people with learning disabilities, autism, and sight loss, enabling them to realise their goals each and every day."
We thought we’d never be able to have a family holiday, but SeeAbility helped us do this every year, allowing us to create so many special memories that we’ll cherish forever. Together, on our annual family holiday we celebrated Robert’s milestone thirtieth birthday. It truly highlighted the life that SeeAbility had supported Robert to create for himself.
In September 2019 we had ten glorious days of sun with our boy at his SeeAbility home. We laughed, we loved and, finally at peace, we said goodbye to our lovely Robert.
"Looking back, we can honestly say that SeeAbility is the best thing to have happened to Robert and our family. They gave us peace of mind and allowed us to become mum and dad again. Because of SeeAbility, we were given more time with our son than we ever dreamt possible, and we can’t thank them enough."
If you can, please do support SeeAbility’s work. Every penny you give will help SeeAbility continue to provide specialist support, that will enable more people with disabilities to live, love, thrive and belong.
Pam and Gary