Proclamation Dramatizes Little Known Williams Syndrome

FOR THE LOVE OF SELA

Jim Kevlin/The Freeman’s Journal
State Sen. Jim Seward, R-Milford, presents the Williams Syndrome Awareness Week proclamation to Sela Quinonez, 6, of Edmeston.  With Sela are mom Stephanie, dad William and sister Odessa, 13.

Editor’s Note:  These are state Sen. Jim Seward’s remarks Monday, May 9, at Bassett Hospital, in announcing Williams Syndrome Awareness Week.

Williams syndrome is a relatively unknown, rare genetic disorder.
The general public, educators, even many doctors are unaware of Williams, yet it affects one in 10,000 people worldwide.
I must confess, I was not familiar with Williams syndrome myself until I heard from Stephanie Quinonez.
Stephanie and her husband Willie live in Edmeston, and one year ago their 6-year-old daughter, Sela, was diagnosed with Williams syndrome.
They, like so many other families, are now learning about this life-changing disorder, and while it has altered their lives, they now know what they are dealing with and where to seek the best care possible for Sela.
Ev55en the medical community is playing catch up when it comes to Williams syndrome. 
The number of individuals diagnosed with Williams syndrome has actually increased five times in the past five years alone, as more and more doctors become aware of this disorder.
One of those doctors who does understand Williams is with us today, Doctor Monica Brane, a pediatrician with the Bassett Healthcare Network in Oneonta.
Along with the need for public awareness and an understanding of Williams syndrome comes the need for funding to help care for those affected by the emerging disorder.
There are ongoing medical needs from birth through adulthood. 
From early intervention services like speech or occupational therapy to adult needs like group housing and other supportive assistance programs.
This Saturday, May 14, at New Hartford High School, there is a fundraising walk for Williams syndrome, it is in its fifth year, and it is organized by another caring parent – Bridget Jones of New Hartford, (who was present at the Seward announcement with her daughter and husband).
Last week, the state Senate adopted a special legislative resolution proclaiming this week as Williams Syndrome Awareness Week in the State of New York.
At this time I would like to present a copy of the resolution to Sela Quinonez and her family.
You are the reason why the whole State of New York is now learning about Williams Syndrome.
Generating public awareness about Williams syndrome is an important step in supporting patients who suffer from the disorder, along with their families, improving care and advancing future research.

What is Williams Syndrome?
Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.
WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.
More at www.williams-syndrome.org