It has been over 2 ½ years since Joshua was diagnosed with Cystinosis. Much has transpired since that fateful doctor’s appointment back in January 2008. Joshua is now 4 years old and doing well. His year has been filled with many milestones. Recently he “graduated” from physical therapy and has begun Tae Kwon Do classes. He has continued to gain weight and finally reached the growth chart for his height! Joshua has also made great strides with his occupational therapy and will be starting pre-school in January.

Joshua currently takes eight different medications a day, every 6 hours. In addition, he is injected nightly with growth hormone. He continues to receive two hours of occupational therapy a week. He has made great progress with his eating difficulties; he continually asks for food and now is willing to try new foods and textures. He is, however, still unable to eat enough to sustain him. He relies on his G-tube for his daily nutritional needs and medications.

Joshua remains a loving, energetic and joy-filled little boy. His beautiful spirit keeps our family smiling and laughing. Joshua enjoys sword fighting with whoever will spar with him, hopping in the car and going wherever and he absolutely loves his Tae Kwon Do classes. He has been blessed with two siblings who want to play with him always and spoil him whenever they get the chance. Joshua has become a very accomplished helper around the house, enjoys music and has discovered the joy of video games.

Two and a half years ago our lives changed forever. In the months that followed his diagnosis, we were without hope and knew only despair. We have certainly come a long way. With the help of the Cystinosis Research Foundation and all those involved with it, especially Joshua himself, we have much to be hopeful for. We are not immune to the worries for the future; hourly eye drops to dissolve painful crystals, renal transplant, and a host of other related organ malfunctions. We work each day and pray that the life-saving medication, Cystagon™, will continue to prolong his life and prevent the horrible effects of this disease from causing Joshua any further damage. We are very thankful for all those involved with the Cystinosis Research Foundation and the great strides they have already made for these patients. We are confident that a better quality of life is on the horizon for all Cystinosis patients and a cure is not far away.

Thank you for your continual support of our family and Joshua’s Journey of Hope.

Board of Directors:

President: David J. Clarke
Vice President: Douglas R. Fritz
Secretary: Marianne Clarke
Treasurer: David C. Clarke
Directors:  MaryAnn Lawson,  Theodore Szyskowski, Francis Szyskowski, Cynthia Fritz, 
Sandra Fritz