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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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Together, we create a personalized plan to help you meet your goals. These sessions can take place in person or virtually.

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Resources :

Follow me on IG: @wholymom or Facebook: facebook.com/wholymom

Have Questions? Send me an email at: info@wholymom.com

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

Website: www.gracesquad.com

Spastic Paraplegia Foundation

Early Childhood Intervention Programs: 

Selective Dorsal Rhizotomy Q&A with Dr. Robinson

Thank you so much for joining me this week on The Wholy Mom Chat! Please share this episode with all the mamas you know.

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I am here to remind you that YOU MATTER. Your feelings, desires, unspoken needs, and all of you have a purpose. I am here to walk with you and to cheer you on. I believe in you.

YOU CAN GET THROUGH THIS SEASON!

So let’s rediscover our true selves, reclaim our time, energy, care for ourselves to be the woman we want to be, and most of all, THRIVE.

So let us rise up and show up as a better version of ourselves!

Let’s do this!

Jenny

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