My first memory of Hannah was a tiny beach blond toddler with a big smile, in the corridor of ward 3CD at Great Ormond Street. Hannah was 10 months older than our daughter who also had Pfeiffer’s syndrome. The two girls became firm friends, despite living at opposite ends of the country. The hospital would try and coordinate our visits, so that Hannah and Sasha would be in hospital together. They faced tough times, but also filled the ward with laughter: playing tricks on their mothers; joking with the nurses; making silly films together; inventing raps; watching Pirates of the Caribbean over and over again; and causing general mayhem, usually after bedtime!
Hannah gave so much to our family and now it is time to give something in return. I watched Hannah “walk through water” while the rest of us “walk through air” Being witness to that “invisible struggle” motivates me to support other children and families who are facing similar struggles now.