Grandad wants more inclusion in Down's syndrome bill

A man whose granddaughter has a rare genetic disorder wants a larger group of vulnerable people to be included in a new Down's syndrome bill.

Chris, from Somerset, said he welcomes the bill, but that four-year-old Ava is being "discriminated against".

He said the bill, which offers life-long care to those with Down's syndrome, should be inclusive of other syndromes, disorders, and disabilities.

He has set up a petition which has more than 2,000 signatures.

Ava has Williams syndrome which is a genetic disorder and struggles with day-to-day life.

Her grandfather, who lives in Radstock, said the condition affects her muscle tone which means she cannot walk, she does not speak due to developmental delay and her hearing is over-sensitive.

Ava's mum, Lizzie, said her daughter has "not had an easy four and a half years".

"Even when I was pregnant I was told to consider a termination just before 24 weeks due to her head being small and she's been poked and prodded since she was little," she added.

Chris said: "My initial reaction [to the bill] was surprise, and I was angry and thought 'but what about Ava, why are they missing out Ava?'.

"Then I had time to process it and realise it's a much bigger picture.

"It's not just Ava, there's countless other people with Williams and other syndromes and disabilities, why should they be excluded?"

The bill was drawn up by north Somerset MP Dr Liam Fox who said it would "lighten the burden" on parents who worry about what would happen to their children after they died.

He said that because legislation has to be sorted out within a year, it has to be specific, which is why it is solely for Down's syndrome.

But, he added, the hope is that it will pave the way for other conditions to get help too.

However, Chris said he hopes people in power, like Dr Fox, realise "it was a mistake to miss out everyone else".

"If a bill was passed that was to help blind people but not deaf people... there would be a huge uproar, this is the same thing, helping [people with] Down's syndrome but not people with Williams and other syndromes and disabilities."

Lizzie added: "There'll be a point where I can't [look after] Ava and knowing there would be some sort of care for [her], it would be really reassuring."

Shadow Leader of the House of Commons Thangam Debbonaire said: "Disabled people have all sorts of different needs and there'll be all sorts of other disabled people watching this going 'well where's my bill?'.

"I think what we need is proper disability rights equality legislation that's really strong and actually is backed up by decent resourcing.

"People with disabilities for the last ten years have really struggled under successive layers of cuts but also a lack of recognition."

Ms Debbonaire, who is Labour MP for Bristol West, said while she supports the bill she would "like to see the wider range of disabilities given greater attention".

If approved by both the Houses of Commons and Lords, the Down's syndrome bill could become law by spring next year.

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