This is the story of Sophie and her grandma and main carer Rose, living in North London, and Sophie’s brother Ben.
When Ben was only a couple of weeks old he began to have seizures. At seven months of age, the seizures increased so he was admitted to Great Ormond Street Hospital where they discovered serious brain damage.
During his short life Ben had very few skills. Besides his uncontrolled epilepsy, Ben had no speech, no fine finger movement, was unable to control gross motor skills, was unable to walk, had serious respiratory problems and was visually impaired. Ben required 24-hour care.
Ben died aged 17. His sister Sophie is now 11 years old and is displaying similar symptoms.
Looking to the future, Rose wants The Ark to be built in time for Sophie. Nothing existed for Ben. She explains: “We need to provide a comforting, dignified place for overnight stay and that final transition.”
Read Sophie, Rose and Ben’s full story here.