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Last Updated: Wednesday, 15 March 2006, 20:42 GMT
'I would have missed out'
Ruth Everard
It's normal for SMA children to have high intellect, says Ruth Everard
After a judge ruled that a 19-month-old boy with spinal muscular atrophy should be kept alive - despite doctor's questioning his quality of life - one woman, who also has the condition, says it need not prevent a full life.

Ruth Everard is "delighted". She admits she had concerns ahead of the ruling in the case of 'Baby MB', but is certain the right choice has been made.

Ms Everard recently qualified as a solicitor and, as a graduate of Oxford University, is proof that such a disability is no bar to a successful, fulfilling life.

"Life can be enjoyed whether you can move or not," she told BBC News website.

The 26-year-old left home at 19 to go to university and since then has "managed" four people who provide round-the-clock care.

She now lives in east London, in a home she owns.

Social life

Her SMA is classified as "intermediate". Although she feels no pain, she is unable to lift more than 100 grams, lift her arms above her head or stand.

"I can't move my head. If I lose balance of my head, I can't get it back again," she said.

"I can't lift my head off a pillow or turn in bed."

Nevertheless, she has an active social life and interests - although she has to "get around some things in a fairly circuitous way".

The genetic condition also affected her younger brother, who was born with severe SMA and who died aged 18 months due to a bout of pneumonia.

Ruth Everard with her sister
Life is to be enjoyed, says Ruth Everard

"It came as a tremendous shock to my parents because he had been so well, but we comforted ourselves with the fact that the doctors did everything they could to keep him alive."

If this was to happen now, given advances, he would probably have lived, she said.

She also has a younger sister, born after her brother died, who does not have SMA.

"My parents decided to go-ahead, despite a one-in-four chance that she would be born with SMA," said Ms Everard.

For her parents, finding a way for their daughter to be mobile was key.

It soon became clear that wheelchairs suitable for children with spinal muscular atrophy were just not out there.

So her father Dan, a design engineer, found his own solution. He made them himself.

Now his company supplies chairs all over the world.

Mainstream education

Life was also kept as normal as possible growing up. Ms Everard was educated in mainstream schools.

This not only benefited her, but the people she grew up with, she said.

"They are now better educated about integration. I like to think they are more positive about disabilities."

She said children in the same situation as Baby MB were "fascinated" by things around them.

"It's normal for SMA children to have high intellect," she said.

And it "saddened" her that members of the medical profession considered Baby MB's quality of life was so poor he should be allowed to die.

"I know a lot of doctors who understand that it's a personal choice," she said.

"People who haven't been in this situation might say that not being able to move at all means that life isn't worth living, but unless you have been in that situation, you don't know that.

If somebody had decided to switch off my ventilators then I would have missed out
Ruth Everard
"Actually the human spirit is a lot stronger than that.

"My standard for living is what would you have been doing if you were able-bodied?

"But it isn't those things that make me a valued member of society. The fact is that my brother had a tremendous effect on the people who knew him. He was my best friend.

"You can't change that, you can't take it away.

"What upsets me is when people consider that I might be less valued because of the situation.

"If somebody had decided to switch off my ventilators then I would have missed out.

"It's life. Life is to be enjoyed. There are those who might live their lives a different way, but you would never chose not to live.

"I go to work, put the rubbish out, go to the pub. It's a good life."

Is Baby MB's life a life worth living?
15 Mar 06 |  Have Your Say
Life of sick baby 'intolerable'
07 Mar 06 |  Health

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