The Dempster Family Foundation was initiated in January of 2010 by the Dempster family following the birth of daughter, Riley. Riley was diagnosed with a genetic syndrome called 22q Deletion Syndrome. This syndrome is associated with approximately 180 different diagnostic findings that range from mild to life-threatening affects newborns at a rate second only to Down syndrome.
Six of the ten leading causes of infant mortality are issues which could be attributed to 22q11.2 Deletion Syndrome. The wide disparity between diagnosis, degree
of affect and related multi-specialty physician interaction, often leads to delayed or missed diagnosis. Some of the most prevalent health concerns are also the most challenging for the affected child, their families, healthcare providers and education professionals. Conditions such as; heart defects, cranial-facial differences, breathing difficulties leading to frequent tracheotomies, gastrointestinal issues leading to feeding tube placement, immune deficiencies, hearing loss, low calcium and other endocrine issues.
Learning disabilities are often recognized later in the child’s development with ADD/ADHD/Autism/Social Awkwardness/Anxiety. There is also a potential for additional psychological effects. Conversely, this diagnosis can also be associated with a unique awareness or a heightened ability to excel in areas such as; art, music, literature, engineering or many other sensory-related fields.
The Dempster Family Foundation has identified 22qDS education and awareness as its primary focus moving forward. The DFF is positioned to assist the global 22qDS community with education supports, parent-to-parent networking, awareness campaigns, research, grants and 22q specific programs.