Part 5/11:
As Jaden approaches adulthood, the family contemplates transitioning his medical care from pediatric to adult healthcare providers. This step involves identifying specialists familiar with Pure Syndrome for ongoing management and ensuring continuity of care. They plan to share comprehensive medical histories with new doctors to support this transition, recognizing that long-term prognosis remains uncertain given the recent diagnosis.
The family also discusses the importance of ongoing research, acknowledging that Pure Syndrome is a recently identified condition with limited long-term data. Despite this, Jaden’s current progress indicates that he can participate actively in family life, with hopes that he will continue to do so happily and safely.