Paige-2nd annual PURA conference

Hi, my name is Kerry Hildring.  I am Paige's mom.  Back in 2007 Paige was born "normal", but a hour after birth her blood sugar levels dropped to 3.  She almost died.  She was placed in the NICU, where she was in a vegatative state hooked up to many machines.  What went wrong?  How could this happen?  Throughout the years, Paige has had many MRI's, EEG's, ultrasounds, bloodwork, CT scans, many other various tests, as well as ongoing dr. visits and hospital stays.  Of course, every test ran was normal, showing nothing was wrong with Paige.  However, she was a mystery.  For years, we called it Paige syndrome.  The unknown...a medical mystery. 
As the years passed, she became aware of her surroundings, now walks with a unsteady gait, uses a wheelchair for long distances, makes humming noises for her communication (otherwise, uses her IPAD and talk blocks to communicate with others), and eats pureed food fed to her and pediasure in a sippy cup.
The worse part of it was the seizure like eposides that started just a few months ago.  Its a new, scary territory, that currently is being regulated with med ication.  These episodes make it more difficult to carry on with our everyday routines, because they make Paige extremely tired.
Here we are today, 9 years after her birth.  Amazingly, after having a full xomene sequencing blood test done in November 2015, and waiting 4 months, we got a diagnosis in March 2016.  Paige has PURA syndrome.  PURA is a PUR-alpha protein deficiency.  It is located on chromosone 5, with gene deletions. PURA was just recently discovered in 2014, and currently there are 103 individuals world wide.  Paige, of course, is #51.  Keeping true to her mystery, Paige is the only one with her currently DNA sequencing code with a deletion of the A & C gene.

This gofund me account is being set up, by direct request from family and friends, near and far.  The 2nd annual PURA conference is being held in Philadelphia and we really want to give Paige the opportunity to meet other kids with PURA, as well as their families, medical team, and the Global Research team. 
I truly appreciate any financial help you can provide.  If you know me, you know asking for help, especially this kind is really hard.  I'm the one reaching out helping others out.
To get more info on PURA syndrome, please find the group on facebook,  check out the website at http://www.purasyndrome.org, and don't forget to find and like our page on facebook, "Paige's place, her PURA story" to follow our adventures.
Again, thank you for your love and support.  We will forever be grateful.