Berkeley Daniels Medical Fund

Berkeley is our joyful and caring 5 year old daughter. Approximately 9 months ago, Berkeley began showing symptoms of a rare, genetic, and progressive neurological disorder called Dystonia 28 (fewer than 100 cases in the world). Berkeley's case is severe and rapid - in less than 12 months from symptom-onset, she will require a feeding tube, wheelchair, a device to speak, and a full-time aide to assist her with all activities of daily living. The ONLY treatment for Dystonia 28 is early deep brain stimulation surgery (DBS). https://www.omim.org/entry/617284

In 8 days, the compassion of this community propelled Berkeley's story into the spotlight and both Regence and UCSF have verbally agreed to ensure Berkeley receives her DBS treatment on July 11, 2019. I will continue to update you and please pray that she stays healthy and strong until the surgery and that the surgery is a success. Your donations will be used to ensure Berkeley is supported as she navigates life with a progressive and disabling condition.

Please continue to share Berkeley's story to raise awareness of Dystonia 28, rare disease, disability, the power of compassion, and the challenges of navigating the healthcare and insurance systems.

[email redacted] 

Venmo:

@Brenner-Daniels
@Megan-Daniels-2020

Checks made payable to Megan or Brenner Daniels:

PO Box 1708, Lake Oswego, OR 97035

Media Coverage:

https://www.kgw.com/article/news/local/family-seeks-help-covering-medical-costs-for-5-year-old-with-little-known-disorder/283-99caaadf-e5b7-4480-abb2-017ba893e869

https://www.kptv.com/news/lake-oswego-mother-says--year-old-denied-brain-surgery/article_5321bacc-82a5-11e9-b4c7-43b1b0397839.html

https://fox6now.com/2019/05/30/devastating-mother-says-insurance-company-denied-brain-surgery-for-5-year-olds-genetic-disorder/

Organizations:

https://dystonia-foundation.org/

https://droregon.org/

https://rarediseases.org/