Newspaper article The Evening Standard (London, England)

The Two Children Who Will Never Live to Grow Up

Newspaper article The Evening Standard (London, England)

The Two Children Who Will Never Live to Grow Up

Article excerpt

Byline: PATRICK SAWER

'You do what you have to, you don't have a choice': Tina Harris with Jasmine, 3, and Jordan, 6 WER INCURABLE GENETIC DISORDER LEAVES A FAMILY STRUGGLING TO COPE TO WATCH as the life of one of your children is sapped by an incurable disease must be torture. To live in the knowledge that the same disease will strike your second child has to be more than anyone can bear.

That is what Tina and Mark Harris are having to cope with. Both their children - Jordan, six, and Jasmine, three - suffer from Batten's disease, an incurable genetic disorder that affects only 500 children worldwide.

"We often ask, 'Why should both our children suffer this?'," says Mrs Harris. "It would have been bad enough for just one, but to have both like this is terrible. They are such lovely children. What have they done to anyone?"

Mrs Harris knows there are no answers to these questions, so most days she and her husband just do, in their words, "what needs to be done" to care for Jordan and Jasmine.

And as if providing round the clock love, care and attention to the children was not enough, the couple have thrown themselves into fundraising for research into a possible cure for Batten's disease, holding onto the slim hope that medical science may one day provide an answer to their family's torment.

Mrs Harris, of Shooter's Hill, recalls: "In March 2001, Jordan had his first seizure.

Until then he'd been a normal child."

In the spring of 2002 he began falling over with frightening regularity. An MRI scan showed his brain had shrunk significantly.

Over the next few months Jordan lost his power of speech, was unable to walk and needed help feeding. Finally he was diagnosed with Late Infantile Batten's disease, in which defective genes ultimately force brain cells to shut down. Doctors warned Mr and Mrs Harris, who had met on holiday in Greece and married three years later, in 1988, that there was a 25 per cent chance Jasmine would inherit the disease. …

Search by... Author
Show... All Results Primary Sources Peer-reviewed

Oops!

An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while.