Santa Monica Observer - Community, Diversity, Sustainability and other Overused Words

By Alyssa Sullivan
Family friend 

Go Fund Me for 2-Year-Old with Rare Disease Diagnosed During a Bout with Covid-19

Less than 20 babies are born with CGD per year in the US

 

Alyssa Sullivan

Two-year-old Cyrus Bakhtiari of MarVista is struggling with an extremely rare disease. He was diagnosed with Chronic Granulomatous Disease (CGD), a rare genetic disorder, after testing positive for COVID-19 last year. He was admitted to the ER and went through countless testing and a lengthy hospital stay when doctors at Children's Hospital LA gave his parents the heartbreaking news that he has CGD, a life-threatening disease. This condition is so uncommon that fewer than 20 babies per year are born with it in the U.S.

GoFundMe

Cyrus' parents, Crystal and Chahriar, have recently started a gofundme campaign to raise money for a bone marrow transplant (BMT) which they hope to schedule this summer to give Cyrus the chance to lead a more normal life. The doctors were extremely pessimistic about finding Cyrus a complete bone marrow match, considering his unique ethnic background but of the 40 million registered donors in the worldwide database, one match was found! BMT is a considerable undertaking requiring potent chemotherapy and radiation and can induce countless side effects for the rest of his life.

Even with top-level insurance, the transplant costs and medications-and the potential for complications-are unbelievably high. So we are hoping to have a chance to tell Cyrus' story to your readers in our community to gather more support.

Despite all that he's been through Cyrus is a very happy little boy and likes to play his violin to Vivaldi, cook while we're cooking, dance everyday, and much more!

GoFundMe URL: https://www.gofundme.com/f/Bebe-cyrus-needs-your-help

 

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