Monday, June 22, 2009

A sister tells the story of growing up with a sibling with a genetic disorder

From The Daily Mail in the UK:

Jo Whiley (pictured) has spoken movingly of the bond she shares with her sister, who suffers from a rare genetic disorder.

The 43-year-old DJ's sibling, Frances, (pictured) has a chromosomal disorder called Cri du Chat - so called because of the mewling cry made by newborns with the syndrome.

Frances has learning difficulties, speech problems, temper tantrums and is unable to sleep for very long. She also has very little sense of danger. But in Jo's autobiography My World in Motion, although the DJ admits family life with Frances was at times difficult, it was also 'enchanting'.

The pair were raised in Northampton then in Great Brington by their electrician father and post mistress mother.

Jo told the Guardian: 'She is difficult to define, it is important to say that. She is one of a kind.'

'I was very protective. I used to take her to town on the bus. I was aware that people would stare at her - she used to be obsessed with the ping that makes the bus stop. It used to be a really big event. "We're coming up to our stop!"

'People would start looking round and it would make me very cross and angry so I used to do this Paddington Bear stare back at them: "What are you looking at exactly?"'

She also tells of how her headstrong sister would throw tantrums during supermarket shopping trips and the battles the family faced to defuse the outbursts and get her home.

She said: 'Frances would just go rigid ... there is something enchanting - and liberating - about her lack of inhibition.'

Jo, who has four children, added: 'There was never one moment when I realised there was something different about her. She was just my sister. My sidekick.

'We used to go to special shops, where they did special sturdy boots to help her walk - she was very spindly, her ankles weren't at all strong - and thick milk-bottle glasses.

'They came in either pink or blue frames, with bendy bits to put behind your ears. She looked like Velma in Scooby-Doo. She absolutely did.'

In fact, the family became so well-adjusted to Frances' needs that when Jo was sent to support groups to meet the siblings of other handicapped people, she found she 'couldn't relate to anything they were saying because they felt angry or neglected. And I just didn't. I had no reason to feel angry or sad. I just needed a bit more sleep!'

'Before becoming a mother herself, Jo was tested for the Cri du Chat gene and was found to be a carrier - but luckily none of her children have the disorder.

Now with a house full of children ranging from the age of 17 right down to 18 months, Jo credits Frances for her strong family ethic.

She said: 'I am sure it is because of Frances that I have had four children... I love the chaos and the craziness and the warmth of a family and the laughter.'

Of husband Steve, she says she knew he was the man for her after seeing how he treated her sister - 'Like a person, not a problem.'

As well as hosting her show for Radio 1, Jo is an ambassador for Mencap and organises fundraising concerts for the charity.

Four times a year, Jo and Frances host a club night for people with learning difficulties, organised by their mother.

Jo said: 'We go to various little clubs all over the country. I'm a DJ, I'm usually very much in control, but it became apparent early on that Frances knew what she wanted to play - she wanted to be more hands on. It's brilliant, it really is.

'Now she stands on stage and she talks into the microphone - her speech is quite limited, but it's very moving - she'll say, "I'm Frances Whiley. I'm with my sister. Have a good night".'