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Oldest person with spina bifida   
from the IF e-newsletter

     Last month, the International Federation for Spina Bifida (IF) asked its contact persons to identify the oldest person with spina bifida. IF Board member Jon Burke knew of a person with spina bifida of 80 years old. The Flemish Organisation for Spina Bifida and Hydrocephalus has told the IF office of Albert De Greve, an 82 year old person with spina bifida.
     We received emails from all over the world, identifying elderly with spina bifida. Albert still seems to be the oldest. But our request in our last Newsflash has triggered some of our contacts to tell us about some remarkable people with spina bifida.

Albert De Greve
 
     Albert lives in a retirement home in Sint-Niklaas,and says he is very happy there. People take good care of him. He has a low leasion spina bifida and no hydrocephalus. "Not having hydrocephalus saved my life, because back in those days, there was no treatment for it. Children with hydrocephalus were left to die," he says. There was not much treatment in general. He suffered 45 years with a chronic infection on his foot. Doctors could not do much more than make an incision and prescribe foot baths.
     “Disability” to him are restrictions by society. In the past, his disability was not the main problem; poverty, the second World War and the hunger were issues much more prominent than his disability. He says many times: "What is disability? Limping, like me, or totally relying on others like this 60-year old woman down the corridor who suffers from Multiple Sclerose?" He is still very lucid and mobile, despite the paralyzed feet and calves.
Albert never got married and did not have children. That does not mean he was lonely; he had many friends, likes to play cards and dance. "Not a quick waltz, of course, but a nice tango."
Good News from Raelene Decker

Our daughter, Bethani (who has spina bifida) and her husband Shane (who is deaf) had their first child on Oct. 25.  Alexis Mikayla is a miracle from God to us, and we praise Him that she is healthy and able to hear.  Also, He answered prayers in that Bethani did not have any back labor. She did very well throughout labor and was excited that she was able to have her naturally with no epidural.
Opening address at the International Conference

Mr Graham Webb, famous for the hair products carrying his name, is a person with Spina Bifida. He came to Helsinki to tell his life story during the opening speech of the 17th IF International Conference. A high school dropout at age fifteen, he grew up in London, in government subsidised housing, and overcame the challenges of Spina Bifida to forge a name in the world of business and haircare. He has written a book about his life, more information on his website www.out-of-the-bottle.com.






Note from Pat: I received a call from Graham last year.  He had been in the US on a speaking tour and was donating some funds raised on the tour to Spina Bifida Associations near where he spoke.  We were the lucky beneficiary of a generous donation.  

You may be using his products, check out his website and book!
Meet Karyssa, Irish Dancer

Hello!  My name is Karyssa Miller.  I am a 10 year
old girl with Lipomyelomeningocele, a form of Spina Bifida. 
As a form of therapy, my Mom started me Irish Dancing
about 3 ˝ years ago.  We do a lot of stretching,
and it is good for me.  Now I love it. I dance all the time. 
Recently I went to Dayton, Ohio, to dance in the National
Championship.  And guess what?  I WON! I have worked
really, really hard but it is something I really, really love. 
It just goes to prove if you put your mind to something you
really can do it. In June the World Championships is in
Dublin, Ireland.  I hope to go there to represent our country.
Kris Chynoweth

Kris Chynoweth is 26 yrs old.  He lived at the Gatehouse
in Pittsburgh, PA for 1.5 years, where he gained many
independent living skills. He then moved on to Edinboro
University in Edinboro, PA.  He studied in both the Graphic
Art and Theatre  programs.  He graduated from Edinboro
in May 2006 with a BA in Theatre, specializing in the
technical end of theatre.  Since graduating, Kris has been
volunteering at the York Little Theatre in York, PA.  He has
been helping with set design, designing and making props,
and research. Kris will be moving to the gulf coast of Florida during the summer of 2007, where he hopes to be using his skills in one of the many concert halls or theatres.
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