April 4, 2022 2.16 pm

Lincolnshire mum fights for support as disabled son battles rare disorder

She says the support is a “fraction of” what they used to have elsewhere

The mum of an eight-year-old boy with a rare disorder affecting only 400 children worldwide is fighting for more help for her son who relies on the support of a specialist teacher.

Sarah Johnson said when her son Harry was born he was initially blind and then at around seven months old it was discovered he had Kleefstra syndrome, a multi-sensory impairment (MSI), which only affects around 400 children in the world. It meant severe delays in Harry’s hearing, sight and speech, as well as mobility issues.

When they lived in Buckinghamshire Sarah said her son had brilliant support from an MSI teacher, but when she spoke to the charity Sense about the challenges the family have faced, she said in Lincolnshire Harry gets “a fraction of what he used to get”.

In his previous school Harry used to have a multi-sensory impairment teacher but, according to Sense, just over half of councils don’t employ one at all.

The family currently live in Bourne and Sarah said: “He’s just a little boy who needs an awful lot of help. The help now will enable him to develop future skills for life.”

Lincolnshire County Council said ensuring children with special educational needs and disabilities get the support they need is a priority.

It added that it works to national guidelines on multi-sensory impairment teachers and that Harry’s school has now employed someone to work one-to-one with Harry, who will receive appropriate training.