Braylee’s Butterflies is in memory of Braylee Jo Pridal.
Braylee gained her wings at the tender age of 5 after a courageous battle with a rare genetic condition called LCHAD. In Braylee’s short but memorable life she endured several hospitalizations with many of them being life threatening. Throughout all of her battles she always remained BRAVE and BOLD.
Since her passing in 2017, her family wishes to continue to honor her and other families whom are experiencing similar struggles they did as a family fighting a rare disease.
Did you know that 1 in 10 people are affected by a rare disease.
- 1 of 2 that are diagnosed is a child.
- 3 of 10 won't live to see their 5th birthday.
- 80% are genetic
- 95% don’t have a FDA approved treatment.
Braylee’s Butterflies mission is to be the voice for advocating rare disease awareness and research and support families experiencing grief through child loss. We will BE BOLD, BE BRAVE and BE THE CHANGE for the Rare Disease Community and for assisting families through child loss.
Braylee's story has received attention in numerous publications and has been a catalyst for a large hospital research grant. Along as a featured memorial story of Children's Miracle Network Radiothon at a local children's hospital. Below are some of her story publications.
Story with Ultra Rare Advocacy
Honoring Braylee- Marshall Independent. Local News paper.
Battling A Rare Disease- Keloland News
Braylee's Butterflies is a program of With Angel Wings, a non profit supporting families through all aspects of child loss.
Braylee's Butterflies is in memory of Braylee Jo Pridal
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Braylee's Butterflies Family Assistance Fund
In the rare disease community, nearly half of all families report needing to borrow money from friends and family to pay for treatment. That is often after exhausting medical benefits and personal savings. Equipment and therapy can be expensive and beyond the insurance or medical aid benefit. Furthermore, parents and caregivers often report significant time away from work for doctor visits or hospitalizations.
The trauma of living with a rare disease can be devastating to a family. No one should have to worry about the mounting medical costs of treatment and travel associated with treatment. Braylee's Butterflies Family Assistance Fund can help eligible families receive aid for:
- Medical food
- Bathroom Adaptations/Equipment
- and more!
Donation to family may also be matched by With Angel Wings assistance fund.
Families Braylee's Butterflies Family Assistance Fund has been honored to support:
- Lauren and Maleah Schubert and family- Hereditary Chronic Pancreatitis.