From the BBC:
“Grandad wants more inclusion
in Down's syndrome bill”
(Ava with her grandfather Chris)
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.
The Williams syndrome foundation
said the condition affects around one in 18,000 people in the UK. 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."
'Really struggled' 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.
^ Hopefully other disabilities
and illnesses will be added to this Bill so that those that need long-term
medical care will be guaranteed that for the rest of their lives. ^
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