A COUPLE from Bury give back to a cause that cared for their son after he was diagnosed with a rare genetic condition.
Pam and Gary Turner are raising money for the charity SeeAbility, which cared for their son Robert after he was diagnosed with Juvenile Batten Disease, an extremely rare fatal disease.
SeeAbility, a charity specializing in supporting people with learning disabilities, autism and rare conditions such as Juvenile Batten, supported Robert for seven years at Heather House in Tadley, Hampshire until his death in 2019 , at the age of 33.
Batten disease, also known as neuronal ceriodian lipofucinoses (NLC), progresses differently for each person who has it, but shared common symptoms include visual impairment leading to blindness, severe seizures and loss of abilities driving.
Although Robert was not expected to live beyond the age of 30, this family believe the specialist care at Heather House enabled Robert to live much longer than expected.
In a letter, Pam and Gary said: “On September 21, 2019, Robert died aged 33, after we were told it would be a miracle if he lived to be 30.
“We know in our hearts that his life has been extended by the level of expert support and beautiful setting of his SeeAbility home.”
Robert’s parents praised the support he received from Heather House staff, saying they had “all the time in the world” for him.
“What we liked the most was that they treated him like an adult, giving him choice and independence. He thrived as a result.
“We can honestly say that SeeAbility is the best thing that has happened to Robert and our family.
“They gave us peace of mind and allowed us to be moms and dads again. We were no longer his caregivers, but his parents.
“Thanks to SeeAbility, the family has also been able to vacation together each year, which they thought was never possible.
“Together on our annual family vacation, we celebrated Robert’s 30th birthday. It really shined a light on the life SeeAbility had helped Robert create.
“In September 2019 we had ten glorious days of sunshine with our boy at his SeeAbility home. We laughed, we loved each other and, finally calmed down, we said goodbye to our adorable Robert.
“Thanks to SeeAbility, we spent more time with our son than we ever imagined, and we can’t thank them enough.”
SeeAbility has launched the Live Beyond Expectations call which will run from June 24th to July 27th. You can donate to the appeal on the SeeAbility website.
The campaign is supported by the Family Building Society, which will match the first £2,500 raised.