A COUPLE from Bury is giving back to a cause that cared for their son after he was diagnosed with a rare genetic disorder.

Pam and Gary Turner are raising money for charity SeeAbility, which cared for their son Robert after he was diagnosed with juvenile Batten Disease, an extremely rare life-limiting illness.

SeeAbility, a charity specialising in supporting people with learning disabilities, autism and rare diseases such as juvenile Batten, supported Robert for seven years at Heather House in Tadley, Hampshire until his death in 2019, aged 33.

Batten Disease, also known as Neuronal Ceriod Lipofucinoses (NLCs), progresses differently for each person who lives with it, but common shared symptoms include visual impairment resulting in blindness, severe seizures and the loss of motor skills.

Bury Times: Pam and Gary Turner Pam and Gary Turner

Although Robert was not expected to live past the age of 30, this family believes Heather House’s specialist care allowed Robert to live far longer than expected.

In a letter, Pam and Gary said: “On 21st September 2019, Robert passed away when he was an unbelievable 33 years old, after we were told it would be a miracle if he lived to 30.

“We know in our hearts his life was extended by the level of expert support and the beautiful setting at his SeeAbility home.”

Robert’s parents praised the support he received from the staff at Heather House, saying they had “all the time in the world” for him.

“What we loved most is that they treated him as an adult, giving him choice and independence. He thrived as a result.

“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. We were no longer his carers anymore, but his parents.

Bury Times: Robert Turner as a small child before his diagnosis Robert Turner as a small child before his diagnosis

"Thanks to SeeAbility, the family were also able to have a holiday together every year, something they thought might never be possible.

"Together, on our annual family holiday we celebrated Robert’s milestone 30th 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.

“Because of SeeAbility, we were given more time with our son than we ever dreamt possible, and we can’t thank them enough.”

SeeAbility has launched the Living Beyond Expectations appeal which will run from June 24 until July 27. You can donate to the appeal on SeeAbility's website. 

The campaign is supported by the Family Building Society, who will double the first £2,500 raised.