Prayer Request for Joshua Clark

Joshua was diagnosed with Fanconi Syndrome when he was 9 months old.  This rare illness has many incapacitating effects.  It seems we were just getting into a routine with treating Josh for Fanconi when his nephrologist sent him to San Diego to be tested for Cystinosis.  Fanconi is a symptom of Cystinosis.

   We have received the devastating news that Joshua has Cystinosis.  I encourage you to look it up on-line if you are interested in this rare and fatal disease.  In addition to all the Fanconi complications Joshua's life expectancy is predicted to be around 20.  His amino acids turn to crystals and these crystals go to the eyes, kidneys, liver, and brain with resulting deterioration.  Blindness at an early age is common,  and a kidney transplant (to help him live as long as possible) is recommended before the age of 10.

  He continues to get medication through his GI tube every 3 hours.  That process takes 1 hour each time so that the large quantity of meds can be distributed at 15 minute intervals.
    We are all coming to terms with this condition.  First we must see how we are able to assist DJ and Rose,  then we will get proactive in whatever way we can.  There are only 200 children in the US with this illness so research is not as common as with other diseases,  but Josh's only chance at a near normal life is with research.

Please keep praying that God will help researchers to discover new helps and even a cure.