Experience story

Diana about her daughter Natalya

Natalya Rose was born on April 10, 2009 . We got the diagnosis of PHIP related disorder / Chung-Jansen syndrome just a few years ago. Natalya has struggled her whole life having different kinds of psychological and physical problem, such as:

  • developmental delay
  • cognitive disability
  • lack of impulse control (ADHD)
  • ASD
  • sensory processing issues
  • anxiety ( Generalized Anxiety Disorder, PTSD )
  • extreme behavioral issues (including pathological lying, compulsive overeating and self-injurious or towards others)
  • vision impairment
  • hypotonia
  • urinary issues
  • eczema/food allergies

When you look at Natalya, you don’t initially notice a disability. That’s what makes this rare disorder quite complex. However her violent behaviors have increased throughout the years, creating a domino effect of additional issues.

She now has a team of Drs at Nemours, multiple therapists assisting her 40+ hours a week, and amazing teachers helping her make progress at school. While it’s taken years to build our village, it has been incredibly impactful. Finding the right support systems and advocating is essential. This is a day to day, hour to hour, minute to minute struggle, however finding the silver linings is invaluable.

Natalya has a big heart. She loves helping and caring for others. She also loves anything that relates to art and music. Not knowing what her future will be like is scary, but knowing that she advocates for herself is music to our soul !

Chung-Jansen Syndrome

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