Sophia's Joy List

Sophia is 13 and was born with a rare chromosome deletion.  Almost every organ and system in her little body has been compromised. Those of you who know us know the journey we have been on for the last almost 14 years...

Sophia's disease is progressing in a way we, and Sophia, hadn't anticipated.  Sophia is now in chronic pain, 24/7.  Sophia is tended to wonderfully by Canuck Place Children's Hospice who is helping us manage her pain with a variety of medications.  However, Sophia also has a new development in the form of diminished central breathing...she has developed severe apnea and now requires oxygen.

As a result, a lot of the medications we have and could use are what are called 'respiratory supressants', meaning...giving her higher doses causes her to stop breathing.

Sophia is in a precarious position of finding balance between medicinal support and staying alive. 

With the severity of Sophia's pain and despite medicinal interventions, Sophia no longer wants to go to school and go and do much.  Her pain is inhibiting her true nature...which is to embrace life, to find joy in everything, even the simplest of ideas and meet her disease with furor.  A characteristic she has come to be know for the last 13 years...

Words that describe Sophia are; tenacious, resilient, strong, fun, joy, a fighter.  Her dirty little laugh is contagious.

We have learned that Sophia has a list...a 'JOY' list and we'd like to be able to help her experience everything on her list and more.

We recorded Sophia reading her list...and welcome anyone and everyone to experience Sophia's list with her either by participating in one of the activities, suggesting others that she may not have thought of, or helping us fund the journey along the way.

We really don't know how long Sophia will be with us...we have had her longer than we ever imagined.  But for the time being, we want her to live her life just as she wishes...full of JOY!