Clare's Journey

Monday, July 06, 2009

My Kids Rock!

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About Us

Teresa: Married to my college sweetheart Shawn for 14 years, we have six children - Jamie (11), Clare (9), Simon (7), Violet (5), Eliza (3), and Cecily (1). Our second child, Clare, was born with a rare genetic condition, Williams syndrome, severe congenital heart defects (pulmonary stenosis and aortic stenosis), a Chiari Malformation, mid-aortic syndrome, and kidney issues. She has undergone one open heart surgery and ten cardiac catheterizations to repair her cardiac and vascular defects and has also undergone a frenulectomy (tongue-tie release) and an angio-embolization of her radial artery to repair an A-V fistula and aneurysm. On May 1, she had her longest surgery yet - a bypass graft of her abdominal aorta, a bypass graft of her SMA vessel, and a kidney re-transplant (kidneys transplanted elsewhere in her body). I began this blog when Clare was an infant to chronicle our life on this new journey into Williams syndrome and raising a child with special needs and a chronic heart condition. As our family has grown over the years, now it more details our life as a large Catholic family (while raising a child with special needs and a chronic medical needs)!

View my complete profile

Our Children

Jamie, age 10

Clare, age 7

Simon, age 5

Violet, age 4

Eliza, age 1

What Is Williams Syndrome?

Williams syndrome is a rare genetic condition (estimated to occur in 1/10,000 births) which causes medical and developmental problems. Williams syndrome was first recognized as a distinct entity in 1961. It is present at birth, and affects males and females equally. It can occur in all ethnic groups and has been identified in countries throughout the world. Williams syndrome is caused by a spontaneously occurring deletion of 20 genes on chromosome #7, including the gene that makes the protein elastin, which provides strength and elasticity to vessel walls. The heart and blood vessel abnormalities are caused by this lack of elastin.

Most young children with Williams syndrome are described as having similar facial features. These features include a small upturned nose, wide mouth, full lips, small chin, and puffiness around the eyes. Blue and green-eyed children with Williams syndrome can have a prominent "starburst" or white lacy pattern on their iris.

The majority of individuals with Williams syndrome have some type of heart or blood vessel problem. Typically, there is narrowing in the aorta (producing supravalvular aortic stenosis SVAS), or narrowing in the pulmonary arteries. There is a broad range in the degree of narrowing, ranging from trivial to severe (requiring surgical correction of the defect).

Individuals with Williams syndrome have a very endearing personality. They have a unique strength in their expressive language skills, and are extremely polite. They are typically unafraid of strangers and show a greater interest in contact with adults than with their peers.

(adapted from the Williams Syndrome Association website)

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