In October 2012, Frank’s parents Rachel and Bob were given the worst imaginable news. A neurologist diagnosed Frank with Late Infantile Batten Disease, a rare, incurable, neurodegenerative condition.
The youngest of three children, Frank was energetic, fun and joyful; he was a child who loved to run and play with his brother, sister and friends. He was healthy and had developed as expected, until the age of three-and-a-half when things started to change. “The violent shaking of his first terrifying seizure woke me up,” says Rachel. Over time Frank’s seizures became more frequent and trips to A&E became common.
It soon became clear to Rachel and Bob that something was very wrong – things that had come so naturally to Frank became more of a struggle. He was now unsteady on his feet, struggling to feed himself and could no longer play with his toys. He started to regress mentally, too, and a succession of seizures saw Frank rushed to hospital, undergoing intensive tests.
And so, when Frank was just four years old, Rachel and Bob had to get their heads around the most heartbreaking news: Frank would only live to be, at worst, six years old, and 12, at best.
Today Frank, age 10, is blind, completely unable to move, fed through a tube and needs assistance with breathing. He experiences distressing seizures and suffers from dementia. He needs extensive medications and 24-hour care.
While trying to come to terms with such devastating news, Rachel and Bob also had to deal with the overwhelming task of organising the relevant care and needs for their son. “I cannot begin to describe the complexity and stress of trying to co-ordinate the appointments, the paperwork and the preparation with all the relevant teams to care and advocate for Frank,” says Rachel.
As a healthcare professional, Rachel explained that she was better placed than a lot of parents in the same situation to navigate through the system. However, worryingly the complexity of this nearly broke her. She told us: “I’ve been close to breaking point many times. Advice, support and help from organisations that work with Together for Short Lives may have saved my sanity!”
Rachel found support from children’s palliative care services which has enabled her, Bob and the family to cope and to give Frank, his brother and his sister the best life possible. Says Rachel, “They have supported us from Frank’s devastating diagnosis and they will continue to support us for as long as necessary.”
Rachel explains, “At our local children’s hospice, Shooting Star House, we can hand over Frank’s care and enjoy some precious time as Mum and Dad rather than being Frank’s carers. The environment is not clinical like a hospital, but homely and welcoming with specialist equipment that benefits Frank. He enjoys the hydrotherapy pool, wheelchair swing and sensory room.”
At Shooting Star House, we can hand over Frank's care and enjoy some precious time as Mum and DadFrank's mum, Rachel
Support for siblings
Frank’s brother and sister also benefit from having less stressed parents, who can better meet their needs. They have enjoyed meeting other siblings at the hospice, children who like them have siblings with complex needs and understand the challenges they face.
“What counts now is making the most of every moment with Frank, says Rachel, “doing things that he enjoys and making special memories together as a family.”
If you would like to access support from your local service, head over to our service directory.
To learn more about supporting siblings of children with a life-limiting condition, read our Understanding Siblings’ Needs factsheet.