Origin of “Beautiful and Brave”

“Beautiful and Brave” originated when Everly was only a few days old in the NICU. The most wonderful nurses cared for her and adorned her isolette with artwork that said “beautiful and brave”. No two words could describe our sweet girl better with all she has endured in her short life with such grace.


Little did we know that at only 5 weeks old, Everly would undergo the most invasive surgery: an epilepsy surgery called a hemispherectomy. We are overjoyed that she has reached seizure freedom as a result! Our heart is to respect Everly’s health history, so we share brief snippets online to help families see her amazing journey. We know the connection that occurs when families realize they are not alone, so we are always happy to share more privately! Everly has many diagnoses and medical conditions and sees countless specialists. We also prioritize a variety of amazing therapies to help with the effects of the hemispherectomy as well as her Autistic sensory and support needs.

I was thrust into the world of being a disability/medical mom with the birth of Everly (our first child). Becoming a parent is a life-changing event, but becoming the parent of a medically complex or disabled child is something that no one can prepare you for. Looking back, I wish I could have found the support I offer at Beautiful and Brave Advocacy. I spent countless days and nights (and still do!) researching, making phone calls, reading, searching, emailing, and more to figure out how to navigate this new world and find the best services and supports for Everly.

I have poured my heart and soul into this effort because I believe people with disabilities are worthy of support and a full life. Everly is my “why”, and it has spurred me on to support other families just like you.

Where we are now

  • Families of children or loved ones with all types of disabilities, medical complexity, health conditions, or “special needs”.

    • Grant-funded 6 therapy intensives (2-3 weeks long)

    • Obtained a Medicaid Waiver and robust services in the State of Michigan

    • Grant-raised over $25,000 in special education private school tuition, equipment, and out of network therapy costs

    • Spoken on Rare Disease Day's "Navigating Insurance and Finances" panel

    • Hire and maintain CLS/Respite staff to support Everly

    • Navigated insurance appeals and claim denials successfully

    • Managed care with 15+ specialists including hospital stays, surgeries, imaging/testing, and follow-up care

    • Participated in 2 therapeutic clinical trials

    • Funded a Trexo Robotic Gait Trainer

    • Maximized our private health insurance and Medicaid for maximum savings

    • Established a Special Needs Trust

    • Volunteer as a NICU Parent-to-Parent mentor

    • Locate financial resources for medical and therapeutic needs

    • Funded and implemented high-tech AAC at 2 years old

    • Identified high quality professionals to provide the best medical support and therapy services for Everly

    • Worked with 30+ therapists (OT, PT, SLP, intensives)

    • Worked with many DME companies for various equipment and assistive technology

    • Presented to an Occupational Therapy program's cohort about my role as a caregiver

    • Navigated finances to help our family flourish, even with a child with a disability

  • Beautiful and Brave Advocacy is located in West Michigan. While we have a special emphasis on supporting families in the State of Michigan, we have resources available to families throughout the United States.

    • Health Insurance (public or private)

    • Medicaid /Medicaid Waivers

    • Insurance claims, denials, or appeals

    • Grants for costs (equipment, medical bills, therapy, home renovations, etc)

    • Accessing therapies (occupational, speech, physical, ABA, vision, intensives, etc)

    • Finding medical providers/doctors

    • Childcare (daycare/babysitter/ nanny/ before and after school care)

    • Respite or Community Living Support (CLS) services

    • Assistive Technology (adaptive equipment, AAC, etc)

    • Durable Medical Equipment

    • Home modifications / Environmental Adaptations

    • General financial resources

    • Government assistance

    • Medical bills/debt

    • Crowdfunding/ Fundraisers

    • Finding community for yourself

    • Finding community for your child

    • Special Education/ IEP

    • Private Duty Nursing

    • Long-term care options for adults

    • Special Needs Trust

    • ABLE Account

    • Accessible vehicle/Wheelchair van

    • College/Vocational Training

    • and many more!

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