'Our son is seen as too disabled for an education'
BBCThe parents of a teenager with a rare neurodegenerative condition have started legal proceedings against a local authority claiming his educational needs are not being met.
Milo Browne, 13, from Howdon in North Tyneside, has 2-Methyl-3-hydroxybutyryl-CoA dehydrogenase deficiency (M3BHA) and many with the condition do not live past two years.
His parents removed him from a specialist school in 2024, claiming his complex needs were not being met, and now believe he is considered "too disabled" for an education.
North Tyneside Council and the North East and North Cumbria Integrated Care Board (ICB) said they were committed to ensuring Milo's needs were understood and met.
His parents Stephen Browne, 40, and Laura Davidson, 41, said they had been fighting to get an education provision in place for him for two years.
Milo needs oxygen and he requires a special procedure to clear his airways several times a day.
His father said it was a "high risk procedure" and he and his partner had been specially trained to carry it out at home.
Browne said: "We care for Milo 24 hours a day.
"Most nights I have two hours sleep, but you still have to function and get his medication right.
"Making a mistake would be the difference between him being here and not."
He said his son's education would need to include sensory stimulation and hydrotherapy and living without these provisions had had "a drastic impact" on his health.
North Tyneside Council said it recognised the "complex education and health challenges" Milo faced.
"We are committed to ensuring that his needs are fully understood and met, and that his family feels supported," it said.
"We have worked with his family over several years and remain dedicated to doing everything we can to secure the best possible outcomes for him, both now and in the future."
The ICB said it understood the "challenging" situation.
It said: "We have extensively sought out suitably experienced care providers to provide the support he needs."
It also said a number of providers had been "unable to meet Milo's complex needs" and it was exploring other options to support the family.
Browne said: "We've always felt that because Milo is such a complex case that he's too disabled for an education.
"That's what they've deemed it as, his medical needs are too great.
"I want him to have what everyone has and not be failed or ignored."