Patient Stories
CDKL5 Deficiency Disorder: Partridge Family
Diagnosed with CDD at the age of four, Amber’s doctors told her family she would never walk, talk, or feed herself. Discouraged that she may not meet traditional milestones, Amber’s mother Carol-Anne dealt with extreme grief. Leaning on the CDD community, she found a source of strength as families united in support of their children.
With little known about the disorder at the time of Amber’s diagnosis, her mother Carol-Anne made a vow to educate loved ones, neighbors, and healthcare professionals about CDD. As the Chair of CDKL5 UK and Secretary of the CDKL5 Alliance, Carol-Anne and her family work to improve the lives of CDD children globally.