One of a Kind

This is YOUR chance to help Diego! Rare disorders are often called “orphan,” yet neither the child nor their families should be orphans. Rare diseases are actually not so rare! There are over 400 million patients, 50% of the patients are children, and 30% of those children are not expected to see their 5th birthday as many do not have treatments yet. 

Diego is a 3 year old boy who simply loves spending time with his family and playing with airplanes and trucks. But Diego’s life has been severely impacted. At 18 months of age, Diego was having continued trouble with his gross motor skills. “Little did we know where this journey would take us. First came the fear and confusion. Navigating all the medical tests, the anxiety of the results, and trying to understand the medical language that we never thought we would have to face. Then came the diagnosis (autosomal recessive Zellweger Spectrum Disorder)and the subsequent denial, searching for second opinions, confusion matching our reality with the diagnosis,” express Andrew and Maria, Diego’s parents. Diego is a happy boy who enjoys

playing with balls, Play – Doh and painting. He loves singing and counting things. He is working hard on his walking skills and enjoys celebrating every small step. 

As a new student to Hillel, part of my course requirements consist of a 10th grade thesis, and I am eagerly asking for your help. Embarking on this mission, I wondered what is something that I could focus on, not just for my own personal advancement, but for others too. Little did I realize that I was about to embark on a mission of saving a young boy’s life. I came across a fabulous thesis assignment that is both educational and meaningful, and I am eager to share with you Diego’s story. For a few months I have been working with a scientist at the Weizmann Institute of Science, a leading research facility in Israel. Specifically, I have been studying rare diseases (peroxisomal disorders) with world renowned scientists whose passion is to help children suffering from rare diseases and increase awareness for such disorders. 

Diego is diagnosed with Zellweger Spectrum Disorder (a Peroxisome Biogenesis Disorder). PLEASE help me make a difference in Diego’s life and the lives of others by donating to this important cause as every day is crucial and money for research is key. Through my thesis, getting to know Diego and his family over the past few months has been an emotional and powerful experience, but Diego is more than a picture and a letter. Diego is a sweet three year old boy who desperately needs our help. Scientists at the Weizmann Institute and other researchers are working quickly to research ways of saving Diego and prolonging his life. They are optimistic, but need our help! With our help, we can be part of making Diego’s story end happily ever after. I am optimistic and look forward to sharing good news with all of you in the future! Please forward the go fund me link to as many people as you can. As Diego’s parents said,“Research can save the life of my son and

other children with peroxisomal diseases, and your work is my hope.” Let’s donate to this worthy cause as funds are needed to continue the research. 


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