Welcome to 22Q11 Hearts of Hope

Perhaps you have found our website because
you or someone in your family has been diagnosed
with 22q11 deletion syndrome. If you are a teacher,
physician, or a parent of a child with 22q11, please
read through our information. We hope you will find
it helpful.

About us

about us

The purpose of this foundation is to support and encourage families affected by 22q11 deletion syndrome. We also want to raise awareness of this syndrome in the medical field – especially among pediatricians and ear, nose and throat specialists. There is a need for screening newborns for this syndrome. There is also a great need for support for adults with this syndrome. Donations will be used to help meet these needs.

what is 22q11 DELETION SYNDROME?

22q11 deletion syndrome is a genetic disorder caused by the deletion of a small piece of chromosome. This syndrome affects 1 out of every 4,000 infants. This number is probably even higher because milder symptoms can go undiagnosed.

The features of this syndrome vary widely from person to person; even among affected members of the same family. The signs and symptoms of this disorder include: heart defects, cleft palate, weak immune system, ear infections and hearing loss, kidney abnormalities, feeding difficulties, and low blood calcium which can result in seizures. Developmental delays and learning disabilities are also common. In older children and adults with this syndrome, depression, anxiety, and other mental problems often develop.

Because the signs and symptoms of 22q11 deletion syndrome are so varied, other names such as: DiGeore Syndrome, VCFS (velo cardio facial syndrome) and Shprintzen Syndrome are used to describe different aspects of the syndrome. They all fall under the umbrella of the 22q11 deletion. Please contact us for more information.

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