Kevin Alexander's Personal Experience with PKU

Introduction to PKU

Dietary Restrictions:
- Very low protein diet.
- No meat (steak, chicken, bacon), cheese, milk.
Impact on Life:
- This diet has been his norm; he's grown accustomed to it.

Career:
- 10 years in professional video production.
- Roles: News, corporate, and wedding videographer.
Notable Experiences:
- Covered Hurricane Katrina shortly after the disaster.
- Interviewed various celebrities, senators, governors.
- Extensive travel for work including countries like Russia and Ireland.

Comparison to Historical Context:
- 40-50 years ago, PKU patients often faced severe limitations.
- Today, with treatment, he leads a fulfilling life.
Life's Opportunities:
- Education: Bachelor's in mass communication, Master's in theological studies.
- Daily practices: Journaling, reading, personal growth.
Importance of Diet and Formula:
- Strict adherence to diet and medical formula is crucial for functioning.
- Without it, he believes he would have faced severe developmental issues.

Children:
- Second son, Will, diagnosed with PKU at 11 days old.
- Will's prognosis is positive with proper diet adherence.
Will's Aspirations:
- Will wants to research PKU in the future.

Education on PKU Needs:
- Emphasizes the necessity of medical foods for PKU patients.
- Highlights the difference from diabetes management.
Consequences of Poor Management:
- Lack of access can lead to severe health consequences:
  - Death, seizures, organ failure, institutionalization.
Call to Action:
- Urges for public support and awareness for access to medical foods.
- Importance of decision-makers understanding the issue.
- Cost-effectiveness of treatment vs. institutional care.