​About Us

We are the Petrilli's!  The three of us are strong, positive, loving and appreciative.  Our family motto is to "Live Life to the Maks" The youngest member of our trio is Maksim (Maks for short).  Maksim has been diagnosed with Pfeiffer's syndrome but that does not define him or our outlook on life.  

Our family quickly realized that even if life is not as we expected it to be that it can still be really incredible!  We started looking on the bright side while living our own version of "normal" and loving it!  

I designed this clothing label and website with hopes that in its own small way it will not only encourage acceptance of different syndromes and conditions but also awareness of positivity in the lives of our young warriors!

What is Pfeiffer's Syndrome?​
Pfeiffer Syndrome, first reported in 1964, results from mutations in the FGFR1 or FGFR2 gene. These genes provide instructions for making proteins known as fibroblast growth receptors 1 and 2.  Among their multiple functions, these proteins signal immature cells to become bone cells during embryonic development.  A mutation in either the FGFR1 or FGFR2 gene alters protein function and causes prolonged signaling, which can promote the premature fusion of skull bones and affect the development of bones in the hands and feet.

Characteristics include:

  • Skull is prematurely fused and unable to grow normally (craniosynostosis)
  • Bulging wide-set eyes due to shallow eye sockets (occular proptosis)
  • Underdevelopment of the midface
  • Broad, short thumbs and big toes, possible webbing
  • Hearing loss
  • Dental problems

How can you help?​
​1. You can donate blood.  The need for blood is constant and saves lives.

2. A big impact in helping kids with Pfeiffer's Syndrome and other craniofacial conditions is to be accepting of differences.  
​
Please take a moment to read this article another mother wrote.  She said it best!
Copyright © 2015