Welcome to Jacob & Kylie's Site!!!

DID YOU KNOW??? Every 3 1/2 minutes a baby is born with a birth defect in the United States.

Kylie was delivered into our lives, into our hands, into our hearts! We are truly blessed! We Love You!! We wish you carefree days of bug discovering, puddle jumping, belly laughs, goodnite stories & wishing stars.

Join us in celebrating "A Day For Hearts - Congenital Heart Defect Awareness Day"

Derek Acorah Derek is Britain's finest professional Spirit Medium with extensive international television and radio coverage, championing the world of Spirit.

Mommy's long time friend, Jason. You can buy his book online! I have known Jason, for awhile and he has quite an amazing imagination. I am reading his first novel and it is excellent. I've never really liked Sci-fi or fantasy novels, but I'm hooked thanks to him. Watch for more books by him as well!!!

Promote YOUR business brick by brick on The Great Wall of Business!! For More info click.

http://www.bubbasbears4chd.com - Their mission: To provide a teddy bear to every child living with a congenital heart defect and as many parents and siblings that have lost a child or sibling to CHD as we possibly can.

TCHIN Our goal is to provide information and resources to families of children with congenital and acquired heart disease, adults with congenital heart defects, and the professionals who work with them. Our plans for the future include the development of new materials to meet the educational needs of families and patients, and the provision of expanded resources and support for adults.

CHOP Since its start in 1855 as the nation's first hospital devoted exclusively to caring for children, Children's Hospital has been the birthplace for many dramatic firsts in pediatric medicine. The Hospital has fostered medical discoveries and innovations that have improved pediatric healthcare and saved countless children's lives.

Today, The Children's Hospital of Philadelphia is one of the leading pediatric hospitals and research facilities in the world.

http://www.childrensheartgroup.com "Children's Heart Group at Penn State Children's Hospital is a team of experienced pediatric cardiovascular physicians, working together to provide world class heart care for children. With pediatric cardiologists in every subspecialty, and a world renowned pediatric cardiovascular surgeon, we have experience treating even the rarest of heart defects and conditions."

Childrens Hospital of Hershey "Welcome to Penn State Children's Hospital at Milton S. Hershey Medical Center, where you will find the world's most accomplished pediatric specialists. We offer a full spectrum of highly advanced health care, just for kids. We have the highest level neonatal intensive care unit in the region and our pediatric intensive care unit has received the highest rating for care, placing us among the best in the world. Best yet, our specialists travel to neighborhoods throughout the state so that children can receive evaluation and follow-up, close to home."

http://www.cotafortjw.com - TJ and his story to tell about the importance of this life saving device, Berlin Heart.

http://www.pediatricheartnetwork.com/ - In 2001, the National Heart, Lung and Blood Institute created and funded the Pediatric Heart Network to study problems in children born with a congenital heart defect. To learn more about this organization and their current studies, please visit them

Governor Of Pennsylvania

State Of Pennsylvania

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Facts About Congenital Heart Defects:

~* Congenital heart defects are the #1 birth defect in the U.S

~* It is estimated by the American Heart Association that nearly 1.2 million Americans are living today with a congenital heart defect, some of them don't know it until it is to late.

~* An estimated, on average, 1 in every 100 babies are born with a congenital heart defect (In comparison to Down Syndrome, 1 in every 900)

~* In the U.S nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined, yet, funding for pediatric cancer research is 5 times high than for congenital heart defects.

~* Congenital heart defects are the #1 cause of birth defect related infant deaths.

~* Of the children stricken with Congenital heart defects, 1 in 10 have fatal birth defects.

~* Currently, there is no known cause, cure or prevention of congenital heart defects.

~* On average, 40,000 babies are born each year with a congenital heart defect.

~* Currently, there are over 35 known types of CHD.

Often called a "hidden" condition, the children affected may have no obvious casual signs to the onlooker, but the problems may be many and complex. A clinical test is available, in some cases. As of 12-03-06, 3 genes have been identified [ PTPN11 - 50% ] [KRAS - < 5%] and [SOS1 - 10%] . This is a genetic condition that can affect the heart, growth, blood clotting, mental and physical development. Affected individuals may have behavior problems, learning difficulties and many other anomalies. Noonan Syndrome is one of the most common of those conditions associated with congenital heart abnormality.

It is the second most common genetic disorder after Down syndrome.

The link for the PTPN11 gene to learn more is : http://ghr.nlm.nih.gov/gene=ptpn11

Hospital Information:

Patient Room: At Home as of 9/15/2004 9:15AM

Penn State Milton S. Hershey Medical Center - Cardiovascular Observation Unit (CVOU)

500 University Drive

Hershey, PA 17033

Still its exact cause remains unknown.....

TNSSG, Inc. web site for additional info on Noonans

http://www.noonansyndrome.org

TNSSG, Inc. also offers additional information and support, also a list serv with 200+ members from around the world.

TALK TO PEOPLE WHO ARE MOST AFFECTED BY NOONAN SYNDROME

We operate a list service (discussion forum). If you would like to subscribe, and be a part of our family, send an

e-mail to listserv@home.ease.lsoft.com with only the following command in the message body:

subscribe noonan-syndrome

(AOL subscribers also need to type a period "." in the subject line)

Welcome to Jacob & Kylie's Site!!! Jacob & Kylie
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