This is Enzo my little PKAN warrior he will turn 8 on May 1 and was diagnosed with classic PKAN in May 2016.( 3 years old)

PKAN or Pantothenate Kinase-Associated Neurodegeneration.

It's caused by mutation in the PANK2 gene. And causes iron to accumulate in the brain.

There is no current treatment or cure available.
 What does this mean?

That our once happy, talking, running around child has slowly been taken away by this awful relentless disease.

 Initially they’re perceived as clumsy and later develop more noticeable problems with walking. Then as time goes on and the iron continues to accumulate they start to lose the abilities to talk, walk, do anything independently. The one part of the brain that is not affected is their cognitive ability. So Enzo understands everything he just can’t vocalize what he wants or needs. 

Unfortunately we are well into the regressions and Enzo had to have a feeding tube placed In  November 2020 and now in a February 2021 we went back to the hospital because of the dystonia (uncontrollable movements that are very painful) . All the doctors can do at this time for these little warriors is treat the symptoms that come and try to relax them with medications.

Thankfully we are now set up with home nursing and have complex care team involved. We have some good moments that we try to hold on to as tight as possible but he still struggles daily. We keep adjusting his medications in hope we can reach a comfortable state and that he is still awake.

All money donated goes directly to Enzos account helping pay for Enzos medical costs. 

God Bless