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About Joshua Clarke
JOSHUA’S JOURNEY OF HOPE
30141 Antelope Road, Box D-635
Menifee, CA 92584
How to Help Joshua
Joshua’s Journey of Hope is a non-profit tax-exempt entity under Section 501(c)3.
Federal Tax ID #26-3806532. Your gift is tax deductible and all funds raised go to Cystinosis research.
About Joshua Clarke and JJH

Joshua was diagnosed with Cystinosis in January 2008. It is amazing to look back at pictures of him at 15 months of age before his diagnosis and to look at him now. He is now a thriving 5 year old, doing extremely well and keeping very busy. He continues to grow and gain weight and is steadily moving up the growth charts. Joshua has begun school and is attending a two-year Kindergarten program at the school where his siblings attend. He is progressing very well and has begun to read simple sentences.

 

Joshua currently takes eight different medications a day, every 6 hours. In addition, he is injected nightly with growth hormone and continues to receive occupational and physical therapy for his developmental delays. He has made incredible progress with his eating difficulties; he has increased his volume and is actually finishing small portions of food. He continually asks for food and is trying 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, spirited and joy-filled little boy. His positive energy keeps our family smiling and laughing. Joshua enjoys Tae Kwon Do, building with Legos©, reading books and has recently begun playing baseball. He has been blessed with two siblings who want to play with him always and take excellent care of him. Joshua is a wonderful helper around the house, enjoys dancing (especially during baseball games!) and is counting the days until he can become a Scout like his brother and sister.

 

Three and a half years ago our lives changed forever. In the months that followed Joshua’s diagnosis, we were without hope and knew only despair. We have certainly come a long way. We realize that there are many challenges that lie ahead. Recently, we were faced with our first challenge and one that was not medical in nature. As a result of fear and lack of knowledge about his condition, and more specifically his G-tube, Joshua was dismissed from school in September 2011, after only two and a half weeks of attendance. The school could not provide a consistent explanation as to why he was dismissed only to say that it did not have the appropriate personnel to handle his condition and therefore his enrollment presented a liability for the school. We were devastated. This school was home to Joshua’s siblings and he was very well known and loved by lots of other students. The outpouring of support for Joshua and our family that followed was overwhelming. In many instances, perfect strangers were ready and willing to give a hand in any way they could. In a situation that seemed hopeless, a community came together to bring hope to a little boy and his family. Equally as important, this community and school administration received education and awareness about a rare condition known as Cystinosis. In the end, we were able to come to an understanding and Joshua has returned to school, having a wonderful time.

 

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 transplantation, and a host of other related organ malfunctions. Each day we 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 incredible strides they have already made for these patients. We are confident that a better quality of life and a cure are on the horizon for all Cystinosis patients.

 

Thank you for your support of our family, Joshua’s Journey of Hope and the Cystinosis Research Foundation.

 

Board of Directors:

President: David J. Clarke
Vice President: Douglas R. Fritz
Secretary: Marianne Clarke
Treasurer: David C. Clarke
Directors:  MaryAnn Lawson,  Magaly Rodriquez, Cynthia Fritz, Jonathan Clarke,
Francis Syzkowski

Student Director:  Abigail Fritz