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LOWE SYNDROME TRUST SCRIPT  BBC4 RADIO 4 APPEAL  11 APRIL 2004  PRESENTER:  TOM CONTI

Oscar is a cheeky, loveable little boy. A 10-year-old who loves to watch TV, play video games, listen to music – typical of a boy his age. Except that  when Oscar was almost six, doctors told his parents that he was unlikely to make it to his seventh birthday. He was diagnosed with Lowe syndrome, an incurable genetic disease that strikes only boys affecting their brain, eyes, kidneys, bones and muscles, leaving the lives of its families drastically changed forever.

One mother whose child died from the complications of the disease summed up her feelings: “I hate Lowe syndrome”. I will never forget the moment my husband said those words, on that most horrible of days – the day our beloved son died. I couldn’t have said it better myself. What do you do, what do you say, after you have just seen the cold and still body of the child you have loved and tended for twenty years placed in a body bag and carried away.”

Struggling to come to terms with the diagnosis and the limited knowledge available, Oscar’s mother, Lorraine , decided to set up a UK Lowe Syndrome Research Trust, of which I am proud to be a patron. The good news is that since forming in June 2000, the Trust has raised £200,000 and awarded research grants to Imperial College London , Dundee University , University College London , and Great Ormond Street Children’s Hospital.

Another mother, whose son Conor was born with the disease, is so excited that Lorraine has set up the Trust, hoping that the research will help her son live a longer, healthier life.  Conor is blind and already has had an eye removed and cannot walk unaided due to the symptoms of the disease including arthritis and swelling of the joints. Sadly Conor is suffering another condition of Lowe which is severe seizures, sometimes having to endure four seizures or more within an hour, which is a most frightening experience,.

Lorraine spends every waking moment campaigning.  Doctors feel certain a cure can be found, or better treatment at least, if only their research is supported. It only takes relatively small amounts of funding to continue that research and make a world of difference to Lowe children

Make a credit card donation now by calling 0800 044044:  0800 44044 or Send by post to The Lowe Syndrome Trust, 77 West Heath Road ,

London NW3 7^TH. The Lowe Syndrome Trust, 77 West Heath Road ,