MPS IV TIMES 2

Dear Family and Friends,

Justin and Kianna (my youngest two children)  have very rare genetic disorder called Morquio.  In December we were asked to participate in a  research study.   Three days before Christmas we began flying to Oakland to test if either Justin and Kianna would qualify and/or benefit from the study.  It was determined that Kianna was a great candidate although Justin was not.   As most of you are aware, in January of 2012 my kids and I started traveling to Oakland California  so that Kianna could receive medical treatment regarding her disorder.    I am a single mom of three amazing children, two of which suffer from the same disorder.   This has made our lives very challenging.  

 I have some how managed to work, overcome our medical challenges, and support my children alone.  However, with the new demands of traveling once a week with two children in wheelchairs and medical issues I am not longer able to care for them and hold down a job.   

In addition I have been facing my own personal medical challenges in the recent months.   In July I underwent surgery  to remove mesh from bladder.  I am now under doctors orders to recover an heal for the next several months so that I can prepare for my 2nd surgery.   I have never ask for help before, but our family is in desperate need of everyone's help to survive the coming months.  In addition to our basic expenses our family vehicle  is in desperate need of costly repairs just to keep us safe on the road.   

 I would like to Thank everyone in advance for even taking the time to read about  our family.   We appreciate  all the love and support we have already received in so many different ways.  I understand that not everyone can help, but if you could please keep us in your prayers and pass this information on to your friends and family our family would greatly appreciate it. 

Love,

Darla