We're Fundraising!

Emergency Support for West

West is an 18-year-old patient currently hospitalized with severe craniocervical instability (CCI) related to Ehlers-Danlos Syndrome (EDS). They have been bedbound in the hospital since December 2 and are unable to safely sit, stand, or tolerate positional changes without experiencing dangerous drops in oxygen, loss of consciousness, and escalating neurological symptoms.

West’s condition is considered life-threatening. Their neck cannot safely support the weight of their head, and even small movements pose serious risk. Care requires highly specialized neurosurgical expertise, which is limited and not immediately available through standard hospital networks.

Why Funds Are Needed

When a qualified specialist agrees to accept West’s case, care must proceed immediately. Delays can result in rapid deterioration.

Funds raised will be used for:

• Specialized medical transport that allows West to remain fully supported and safely positioned

• Travel and lodging for necessary caregivers and advocates

• Urgent care-related expenses not covered or delayed by insurance

• Emergency coordination costs required to act quickly when a transfer becomes available

Insurance & Access Barriers

While insurance approval is being actively pursued, authorization processes are slow and do not move at the pace of a medical emergency. In situations like this, families and friends are often required to secure transport, lodging, and readiness costs before insurance decisions are finalized. Financial readiness ensures that life-saving care is never delayed due to administrative barriers.

EDS West Connect is providing real-time advocacy, coordination with physicians, and crisis support while this emergency unfolds.

In emergencies like this, readiness saves time — and time saves lives

— Dena and ALL of #EDSWestConnect