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Episode 11: Trusting Your Gut: A Mother’s Journey with Molley Regan

Parenting is tough sometimes. But when your child is struggling with a disability or health issues, it can be very overwhelming. 

This is especially true when you can’t get the proper diagnosis, the key to getting effective help is understanding what’s going on and advocating for your kids with the right doctors and specialists. 

Today on the show, I’m joined by Molley Regan. I sat down to chat with Molley about her journey with her daughter Grace’s diagnosis of hereditary spastic paraplegia (HSP) 54 and how Molley followed her gut to find the correct diagnosis and treatment for her daughter. We also dive into information and resources for parents who are going through a similar situation. 

Molley Regan is a proud wife, mom, advocate, and full-time Cyber Project Manager for a large Technology & Financial Institution. She has been married to her college sweetheart for 13 years, Tim. They reside in Alexandria, VA with their beautiful daughters Reese and Grace and their crazy, golden retriever George. 

Molley and her family were on an incredible high/low journey for answers for their youngest daughter and the mobility limitations and challenges she was facing. In October 2020, during a pandemic, they took a leap of faith and pursued a life-altering neurosurgical procedure (SDR) at John’s Hopkins Children’s Hospital. Grace overcame the intense physical rehabilitation and is still continuing to get stronger, every day. SDR involves accessing nerves within the spinal cord, determining which of the nerve fibers are causing the spasticity, and severing those nerves.

The DDHD2 related disorder is hereditary spastic paraplegia (HSP) 54, or SPG54. SPG54 is a complicated form of HSP that is characterized by progressive spasticity and weakness of the lower extremities, among other symptoms. The condition is progressive and the rate at which it progresses varies. There have been less than 50 people documented in the world that share the same diagnosis.

Listen in as we discuss : 

  • No matter what the medical professionals say – always trust your gut. You know your child better than anyone. 
  • Find your community to help you navigate this part of your child’s journey, get support, and share resources. 
  • Self-care for yourself during this time, including asking for help.

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Resources :

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Connect with Molley and find out more information about hereditary spastic paraplegia


Spastic Paraplegia Foundation

Early Childhood Intervention Programs: 

Selective Dorsal Rhizotomy Q&A with Dr. Robinson

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