A Mother’s Journey Through Diagnosis and Acceptance of Duchenne Muscular Dystrophy: Debra Miller

WATCH TIME: 4 minutes

"As a mom, you lead with love and where that takes you is completely off the path that you thought you had. In this case, it made me a much better person."

Mothers often serve as primary caregivers for children with neuromuscular diseases, a role that involves coordinating care, managing daily tasks, and supporting their children’s emotional well-being. Prior studies have documented that mothers of children with neuromuscular conditions such as Duchenne and Becker muscular dystrophy frequently reported needs related to uncertainty about the future and coping with emotional stressors.¹ These findings suggested that caregiving can be a complex experience for these mothers, with both logistical and psychological components that may benefit from structured support in the health care setting.

Research has also indicated that caregiving responsibilities can influence maternal well-being. Associations of this in studies have been previously observed between high caregiving demands and increased levels of fatigue, depressive symptoms, and reduced quality of life.^2,3 In some cases, the child’s level of physical functioning may be linked to the caregiver's stress levels. Thus, these outcomes have highlighted the potential value of including caregiver-focused assessments and resources in comprehensive care plans for families affected by neuromuscular diseases.

In honor of Mother’s Day, Debra Miller, chief executive officer and founder at CureDuchenne, recounted the personal and emotional challenges of receiving her son’s diagnosis of Duchenne in a recent interview with NeurologyLive^®. She described the early difficulties in obtaining a diagnosis, the initial despair following the prognosis, and the eventual transition to proactive acceptance. Through her experience, she emphasized the importance of focusing on what children with disabilities can do, the necessity of emotional resilience in caregiving, and the broader perspective gained through adversity. Overall, her reflections underscored the enduring role of maternal advocacy in rare disease care, especially in Duchenne community.

REFERENCES
1. Peay HL, Meiser B, Kinnett K, Tibben A. Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy. J Genet Couns. 2018;27(1):197-203. doi:10.1007/s10897-017-0141-4
2. Mohammed SS, Abdelwahab MS, Zaky NA, Abdelazeim FH. Impact of mother's care burden, fatigue and child's functional level on quality of life in spastic cerebral palsy. Physiother Res Int. 2024;29(1):e2067. doi:10.1002/pri.2067
3. Yilmaz O, Yildirim SA, Oksüz C, Atay S, Turan E. Mothers' depression and health-related quality of life in neuromuscular diseases: role of functional independence level of the children. Pediatr Int. 2010;52(4):648-652. doi:10.1111/j.1442-200X.2010.03094.x

Registration for CureDuchenne’s FUTURES national conference is now open! The meeting is set to be held at the JW Marriott San Antonio Hill Country Resort & Spa in San Antonio, Texas, from May 22 to 25, 2025. To register and for more information, head to www.cureduchenne.org.