
Caregiver Lifestyle Series – Physical Therapy
Our first series will launch to celebrate Rare Disease Day. It will be featured on the Rare Disease Day events list. The first workshop will focus on incorporating physical therapy
Our first series will launch to celebrate Rare Disease Day. It will be featured on the Rare Disease Day events list. The first workshop will focus on incorporating physical therapy
Our second online event in our Caregiver Lifestyle Series. Following our Physical Therapy Series on Rare Disease Day, we now focus on incorporating Occupational Therapy strategies in daily routines. The
Our third online event in our Caregiver Lifestyle Series. This event will focus on developing speech through a holistic approach. We often focus only on the mouth, but this series
Our fourth online event in our Caregiver Lifestyle Series. This event will focus on a therapy that we overlooked. After revisiting it, we saw how incorporating sensory integration into daily
Our fifth and final online event in our Caregiver Lifestyle Series. This event will focus on behavior management therapy that incorporates ABA and Sand Play Therapyinto daily routines to support
In July 2022, we met Adam’s family in Houston, Texas. However, their journey started many years before that and on the other side of the world. During an AADC Family
Yong is a loving, caring father of a daughter named Amy. We met Yong online in a Taiwanese group chat for AADC deficiency families. At the time, we were living
I was excited to interview Juliana, a mother of a son with AADC deficiency, in San Paulo, Brazil. We filmed the interview in October 2022, but it took some time
Prayers work, and miracles do happen. In April 2018, our daughter, Rylae-Ann, was born, and shortly after, was baptized at Holy Spirit Catholic Church. Everything was perfect, and our family
Carebear is a very unique girl. As her name suggests, she has a caring and kind heart that goes above and beyond what my husband and I have seen in
In December 2018, my wife and I discovered our daughter had an ultra-rare disease known as aromatic l-amino decarboxylase (AADC) deficiency. It took time to fully understand this disease. What