AADC Patient Group to Fight for Children's Rights

The patient group of AADC was formally established in the fall of 2007 an expectation to help families affected with AADC patients sharing their life stories, caretaking experience, as well as common problems they encountered. The solidarity will make better understanding and social and psychological supports of this genetically inherited neurological disease for the joined 5 families in Taiwan.

TFRD’s plan for patient group incubation, patient groups' activities and training workshops is primarily seeking to help the struggling patients avoid losing hope and being isolated by providing start-up funding and assisting preliminary operations, such as annual meetings, family fun day and short trips. The goals of the plan are to foster togetherness between afflicted families and respond to their individual and common needs. In the past years, we have successfully developed more than 15 patient groups, such as PWS, SCA, ALD, PPH and Achondroplasia.

On the establishment of the patient group of AADC, Dr. Wu-Liang Hwu, Dept. of Genetic Medicine in National Taiwan University Hospital, was invited to give a comprehensive presentation on knowledge of the congenital malady. Dr. Hwu also taught the families how to take care of the afflicted children, as well as the medication services and options that concerned by the parents.

In terms of caretaking, in addition to cooperating with doctors and taking medicine regularly, “the periodical assessment and rehab therapy, which play important parts in medical practice, have to be paid extra attention for a desirable result.” said Dr. Hu.

The co-founder of TFRD, Mrs. Serena Wu, shared her thoughts and precious experience with the families. They all agreed that faith and family love have always been the utmost comfort and sustaining power while wrestling against their toughest enemy, the rare disorder.   

“We hope that the connection and friendship between families with AADC afflicted children could be so strong that parents are able to stand up to fight for their children’s living rights.” said Mr. Wang, who has been elected the first director of the patient group of AADC in the meeting.