Braylee's Butterflies

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 5^th 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 Butterflies Sponsors a Comfort Cart that is currently at Sanford Childrens, in Sioux Falls SD. This cart will offer activities for young patients, their siblings, and their parents to enjoy during their hospital stay or as they face the end of their child’s life. The Comfort Cart will be stocked with many beautiful, life-giving, items to promote activities that will provide lasting memories for years to come. 

We also have developed a Braylee's Butterflies Family Assistance Fund, to assist with medical costs, travel costs associated for medical needs or just something fun, so they can enjoy something and not have to worry. 

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

https://ultrarareadvocacy.com/patient-story/braylee/

Honoring Braylee- Marshall Independent. Local News paper.

https://www.marshallindependent.com/news/local-news/2018/02/honoring-braylee/

Battling A Rare Disease- Keloland News

https://www.keloland.com/news/battling-a-rare-disease/

 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
• Mileage
• Wheelchairs
• Bathroom Adaptations/Equipment
• Travel
• and more!

Donation to family may also be matched by With Angel Wings assistance fund.