Walk a mile in their shoes
Monday, 2nd February, 2015
By Emily Roberts
David Sedunary has used his experience of having a disabled son to write a book to help inspire and support other parents.
In early January 2014, David commenced writing a book called “Struggling for Harmony with a Disabled Son”.
“Our son Wade was born in 1984 and has Dravet Syndrome or (Severe Myoclonic Epilepsy of Infancy), severe intellectual disability and very challenging behaviour,” he said.
“I have never written a book before and I hoped to be able to help and inspire others.”
David said he had contacted a friend who was an author to help with tips.
“He gave me salient points and I wrote the introduction, first chapter and last chapter,” he said.
“Then I filled in the gaps.”
He said Wade was diagnosed with epilepsy when he had a seizure at seven months of age.
“He nearly died,” David said. “Wade had another seizure three months later.”
Dravet Syndrome is a severe form of epilepsy. It appears during the first year of life with frequent febrile seizures - fever-related seizures that, by definition, are rare beyond age 5.
Later, other types of seizures typically arise, including myoclonus (involuntary muscle spasms).
Status epilepticus - a state of continuous seizure requiring emergency medical care - also may occur.
Children with Dravet Syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others.
After caring for Wade for 30 years, David decided to write the book.
To assist those with a disabled son or daughter, or just to gain inspiration, the book assists with challenging behaviour, gives Wade’s history, medications that help, therapies, activities which help, parents and carers and ways they can help, respite and the quiet heroes.
“The best thing we could do is to take it day by day,” David said.
“We are fortunate to have respite for eight or nine days a month.
“It is fairly demanding, but we have kept going.”
David published his book with the help of his publisher, Ronnie Corso and a friend in America.
“I was determined to get the book out there and put it all over the world,” he said.
Two hundred copies have been printed, and one has been donated to the local library.
“Through this book we offer inspiration and help on how my wife and I have been handling this very challenging situation with our son Wade,” David said.
“As young parents it would have been important to have a book like this available when Wade was of an early age. It would have helped, inspired and guided my wife and myself through the last 30 years.
“We have been caring, loving, worrying, helping and looking to improve the health and happiness of our son Wade for 30 years.”
The book will be launched at the Democratic Club function room on February 13 at 6.30pm.
(For more information or to buy a copy phone 8088 3816, email firstname.lastname@example.org or visit www.davidsedunary.com