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Just as they were recovering from the experience and hoping that life would settle down, Maisie’s eyesight began to deteriorate.

She has since been diagnosed with a rare eye condition called Familial Exudative Vitreoretinopathy.

Maisie’s Mum, Lisa explained it took some time to diagnose the problem: "Masie was between 2 and 3 ... she had an eye exam and they said they couldn't be sure, but they thought it was a genetic cancer which may require Masie to have both eyes removed.  We then had to wait and wait and wait..."

Julian Clegg went to meet the Williams family, visiting Maisie at school, and spending time with her parents Lisa and Seth in their Freshwater home.

Masie at school

Maisie will loose her sight and is officially registered blind. Maisie's family are learning braille alongside her so that they can read with her as she grows up.

Mum Lisa says they want Maisie to have as a normal a life as possible: "Not many people meet Maisie without thinking there is something very special about her - we don't want her to come across as a victim but people need to be aware of what some families go through."

The family are determined that Maisie has as normal an education as possible; she now has a dedicated helper at school, and is in mainstream education.

In 2006, around 1.5 million children, or 19% of all pupils in England's schools, were recorded as having some sort of special educational need.

In October a committee of MPs said that the government should rethink its refusal to separate the assessment and funding of special educational needs provision.

Local councils are responsible for assessing what extra help children may need in schools, as well as funding it.

The Education and Skills Committee has repeated calls for this to end, to increase parents' confidence in the operation of the system in England.

But the government refused, saying this would inevitably result in a new agency to carry out assessments having to be created.

On Tuesday morning’s breakfast show, Julian Clegg will be talking with the Williams family about their thoughts on Special Educational Needs, and he’d like to hear your stories.

He'll also be discussing the issues of inclusive education and asking the question "Should children with special educational needs be taught in mainstream schools?".

And join Julian with Sally Taylor on Monday's South Today BBC One 6.30pm