My son, Henry Benham, who has died aged 21 of a bleed on the brain, found delight in everyday things: a piece of music that he liked, the sound of birds, the buzz and bright lights of a supermarket, his hot feet in a cold paddling pool. He adored swimming and listening to stories – Room on the Broom by Julia Donaldson was a favourite. He also drank far more Coca Cola than was strictly good for him.
His communication was limited. He did not learn to speak, could not see much, and most of the time depended on others for his needs. But he had a smile that could light up a room.
Born and brought up in Birmingham, Henry was an only child, the son I had with my then partner Robert Richwood, a retired civil servant. At the time I was Jane Benham, and had been a TV producer. Robert and I split up when I was pregnant, and Henry spent weekends and holidays with his father in Banbury, Oxfordshire.
At the age of four months Henry was diagnosed with Leber’s Congenital Amaurosis, a rare inherited eye disease. He was registered as blind and later as having a severe learning disability. When he was five he started at the Orchard school in Oldbury, Birmingham, and at the age of eight he learned to walk, which he always did happily with the aid of a friendly arm. Around this time I married Gavin Bateman, and Henry soon grew to love his musical step-dad.
After moving on to the Meadows school in Oldbury, Henry took part in a pioneering project known as TaSSeLs – tactile signing for sensory learners. He was also able to use his tiny amount of vision to control pictures using a system called Eyegaze.
Robert and I managed to obtain local authority funding for a residential place at National Star College in Cheltenham, and Henry started there when he was 19. He loved his life there and was adored by the staff.
Despite pandemic restrictions he managed last summer to have a 21st birthday party, and a cake with sparkly candles bright enough for him to see. On his last walk with me on New Year’s Eve he was so happy to be in the woods in the cold sunshine that he almost danced his way home.
Henry is survived by Robert, Gav and me, and by his cousins, Emily and Alastair, and his stepsiblings, James and Lorni.
