Voices Across America

Family of Rare Disease Child Has Much to Navigate

Toby Lunstad

State: North Dakota
Congressional District: ND01

Diseases

Neurological Disease, Rare Disease

Issues and Challenges

Toby Lunstad has encountered: Access to Expert Providers, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Caregiving, Disability, Job Insecurity / Loss, Medical Devices

My Story

I am the proud mother and caregiver to a spunky and resilient 8 year old girl who has a variant on the CACNA1A gene. Since she started showing delays at 6 months of age, we have had to battle to make sure she gets the care she deserves.

It took almost 3 years to get a diagnosis and once we were told, we learned there was no research, no targeted treatments, and no cure. It was a battle to find specialists familiar with her diagnosis and the havoc it can cause.

We have had issues with coverage for medical equipment, doctors being open-minded to learning about her diagnosis as well as valuing our knowledge as her parents who are actively involved in the CACNA1A community.

We have issues with community accessibility and transportation for wheelchair users, finding qualified caregivers, and finding specialists that are knowledgeable about CACNA1A.

We started a nonprofit to spread awareness and support organizations who are researching for a targeted treatment and a cure for CACNA1A variants and to support local families with out of pocket costs for outpatient therapies and adaptive equipment as well as providing Family Comfort Kits to local hospitals. I have advocated on the state level for issues surrounding disabilities and access to quality care.

My Motivation and Inspiration

My daughter Addilynn is my motivation to make our city, state, and country a place where she can feel comfortable and included throughout her life. She is strong, resilient, and little spunky! She has a tremendous will to live and be part of her community as she has shown us after surviving 4 life threatening neurological events and working hard on a daily basis to be the best she can be. I wish that she didn’t have so many barriers and challenges, but I am dedicated to breaking down as many as I can!

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