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Patti's Comments:
Reading the article linked below 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):
Son's
Death Recasts Image of a British Leader (New York Times
- 2/25/09)
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. ...Ivans early death was not unexpected,
given the severity of his form of epilepsy, known as Ohtahara
syndrome, which requires round-the-clock care.
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. |