Family’s constant struggle

ALL smiles . . . Amanda with her children Cordelia and Oliver

TWO youngsters with an incurable genetic disorder are eagerly looking forward to a new tricycle, promised to them by energetic fund-raisers.

Cordelia and Oliver Cowsill both have tuberous sclerosis (TS), a rare condition which riddles the organs with tumours.

Their entire childhood has been a struggle, with Cordelia battling against epileptic fits which started in the womb, and Oliver locked in his own private world.

Cordelia underwent an eight-hour operation to remove the right side of her brain when she was only 17-months-old in a bid to control the seizures which struck every six minutes, both night and day.

That was exactly six years ago on Easter Sunday, on her father, Martyn’s birthday.

He explained: “It resulted in partial paralysis to the whole of the left side of her body, but the seizures stopped.”

Cordelia, now seven, still has tumours on the remaining part of her brain, can speak only a few words clearly and her vision is impaired.

The youngster took her first unaided steps only a year ago, is still very unstable on her feet and has a learning disability.

Martyn said: “Cordelia’s problems are very different from Oliver’s, but, like her brother, she is very beautiful and we love them very much.”

Oliver (10) has multiple tumours on his brain and has attention deficit hyperactivity disorder.

“To look at him, you would think he was just a beautiful, healthy and happy young boy,” said Martyn.

“But Oliver has a language disorder which severely affects his ability to communicate. He also has a learning disability.”

Oliver has autism which, said his father, adds to his confusion about the world around him.

“He has epilepsy which confuses and terrifies him because he cannot understand what is happening,” he said.

The family live in Dacres Avenue, Greenfield. Mum Amanda cares for her children full-time while husband Martyn works during the day and shares the caring when he gets home. Amanda said: “Cordelia is a little girl who wants to do what everyone else does — but can’t.

“Oliver is a different kettle of fish,” she added. “There is nothing physically wrong with him, he’s very mobile, but he doesn’t understand the world at all.

“The children’s needs are very different, Oliver needs constant attention and Cordelia needs constant help.

“Martyn and I don’t have a normal existence, we can’t watch the TV, read a newspaper or go into the garden because we have to be on duty all the time.”

A chance comment to a fellow-traveller as Martyn caught the train to work brought the family’s plight to the attention of Saddleworth Rotary Club.

It teamed up with Lifestyle Fitness Centre in Greenfield to stage a fund-raising arobathon to raise money to treat the family.

The family went for an adapted tricycle with a back support and central handlebar.

Amanda said: “We went for the tricycle because Cordelia has one she has grown out of, and is way too small for Oliver but he is always getting on it. It’s fantastic, they are really kind.”

Anyone who wants to sponsor the fund-raisers can contact the gym on 01457-871811 or Gill Bussey on 01457-873 022.

TS affects one in 7,000 people. There is no cure, although many people can have TS without any obvious symptoms.