A mum from Spilsby has launched an appeal for £25,000 to take Lincolnshire County Council to court because she claims they have failed to help her eight-year-old son, who has a rare disorder that leaves him living in silence and pain.
Dominique Pettitt appeared in the Skegness Standard in April when she held a candlelit vigil to the “Death of Care” to raise awareness of the struggle she says she and other carers face.
Since then she has become disillusioned with the care available for her son Sebastien, who has the chromosome disorder Phelan McDermid Syndrome and cannot speak, self-harms, has problems walking and is doubly incontinent.
Mrs Pettitt said: “Things have moved on considerably since the vigil in April. Public pressure didn’t work as much as I hoped, so we have now decided to take legal action against the local authority.
“We need £25,000 to pay for this we have started a gofundme campaign which is now up and running.”
The family was living in France when Sebastien was born and diagnosed with the chromosome disorder. Although they were initially able to get therapy in France, the couple made the hard decision to return home to the UK when Mrs Pettitt was unable to find a suitable special school.
Mrs Pettitt said: “We found a property to rent next to Eresby Special school and plonked ourselves there until we could find a suitable house to adapt for Sebastien’s needs.
“I can’t fault the hospital care he has received but he needs more than Eresby can offer him now.
“Sebastien can’t sign and we fought for non-verbal speech therapy only to be told they wanted to discharge him completely last year. If he is on the floor he cannot get up but we are told he’s not entitled to physiotherapy.
“The education, health and care plan by the government is totally inadequate.
”We have appointed a London-based solicitor who specialises in special education need cases. It’s something we are committed to and we will remortgage if necessary.”
In her appeal on the gofundme website she says: “Sebastien can’t speak. He gets only four hours speech therapy a year. He can’t stand up straight.
“The NHS have refused to treat him. We can, They won’t. He can’t cope at a normal special school. He can’t cope in school holidays.
“He self-harms and regresses. He needs to go to a therapy school, every day, 52 weeks of the year.
“The local authority don’t want to pay We have to raise £25,000.00 to pay a solicitor to fight them. Please help us help Sebastien.
“Don’t let him live in silence and pain.”
Lincolnshire County Council said the authority was unable to comment on individual cases. Michelle White, SEND team manager, said: “We can’t comment on individual cases. However, children and young people have a right to family life and the council is committed to supporting them to live at home with their families.
“Any decision to place a child with special educational needs or disabilities in a residential placement is based on a full multi-agency assessment of their needs and consideration of the right provision to meet those needs.
“The council will continue to support this family and use the assessment process to determine the most appropriate services to meet the child’s needs”.
To support the gofundme campaign, visit here