Patti's Comments: Reading this story this morning really touched me. I have served on the board and as a volunteer for our United Cerebral Palsy Association for over a decade. I had never heard of Ohtahara syndrome before this article. But now I know, and there are some resources for folks (see links below article excerpt):
From New York Times: (click for entire article)
Ivan Cameron was just 6, a boy with a lovely smile who was born with cerebral palsy and a severe form of epilepsy that deprived him of the ability to walk, talk or feed himself. He spent much of his time in the hospital, sometimes with his parents sleeping on the floor beside him, helping care for their “beautiful boy.”
...Ivan’s early death was not unexpected, given the severity of his form of epilepsy, known as Ohtahara syndrome, which requires round-the-clock care.
On Wednesday, his death halted, for at least a day, the often acrimonious relationship between Mr. Cameron and Prime Minister Brown, who have made little secret of their antipathy for each other. Mr. Brown, too, lost a child — Jennifer, his first — in 2002 when she was only 10 days old.
Mr. Brown, like Mr. Cameron, has two other small children, including a boy, Fraser, who has cystic fibrosis.
Mr. Brown appeared deeply moved when he spoke in the House of Commons on Ivan’s death after personally intervening to have the scheduled round of prime minister’s questions called off.
“I know that in an all-too-brief life, he brought joy to all those around him,” he said. “And I know also that for all the days of his life, he was surrounded by his family’s love. Every child is precious and irreplaceable, and the death of a child is an unbearable sorrow that no parent should ever have to endure.”
Resources regarding Ohtahara Syndrome:
Ohtahara Syndrome Information Page
From the National Institute of Neurological Disorders and Stroke
Ohtahara Syndrome Support Group
This website is dedicated to the families, carers and friends of Children with Ohtahara Syndrome. Its main aim is to provide information and support to those caring for OS children as well as to those who may have lost children to this severe neurological disorder.
Ohtahara Syndrome: The rare form of epilepsy that afflicted Ivan Cameron
An article from MailOnline Health
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