“Bébé” Cyrus Bakhtiari was born with Chronic Granulomatous Disease (CGD). This rare genetic disorder makes him highly susceptible to frequent and life-threatening bacterial and fungal infections. We would really appreciate it if you read and share his story.
Cyrus is our sweet two-and-a-half-year-old son and our only child. He has a smile for everyone and is delighted by life despite the intensity of what he’s been through.
He already understands three languages and loves classical music. He recently got a violin and loves to hold the bow as he mimes along to Vivaldi. He also loves playing any kind of drums, especially the Japanese Taiko. He likes to dance to House music with his stuffed animals. He brings joy to our lives and to everyone that knows him.
Like most children his age, he has his preferences: red is his favorite color, he loves sloths, and he enjoys eating artichokes and watermelon.
However, unlike most children, he is back in the hospital and fighting for his life.
While life had been progressing almost normally during the spring and summer, and we waited for Cyrus’ liver abscess from last year to heal, we’ve recently had a major setback.
On 9/14/22, Cyrus was rushed to the Emergency Department at Children’s Hospital Los Angeles (CHLA) and has been in the hospital since then due to chest pain and vomiting. The doctors are trying to figure out the cause and are puzzled with this unexpected hospitalization. We must now wait for his body to heal from this current unknown issue, along with the liver abscess, so we can proceed with the bone marrow transplant (BMT).
Our Story So Far
Last year, Cyrus was in pain, and suffering from what we thought was complications from Covid-19. His condition was so severe he was admitted to the emergency room immediately. After weeks of countless testing, and endless blood draws to rule out different illnesses, the advanced teams at CHLA diagnosed Cyrus with the very rare and life-threatening disease, Chronic Granulomatous Disease (CGD). This condition is so uncommon that fewer than 20 babies per year are born with it in the U.S.
CGD is classified as an “orphan disease,” the treatment of which is not considered profitable by the pharmaceutical industry due to the development costs for a limited patient population. Untreated, the relentless waves of critical infection put the life expectancy of someone with CGD at late teens to early twenties. Thankfully, his was caught early—which is not usually the case for most children (especially in developing countries). Yet even with the correct diagnosis, he still spent nearly two months in the hospital before healing enough to finally come home.
Fortunately, the doctors found the right cocktail of medications that are currently keeping him alive. He is still to this day slowly healing from his infections from last year that nearly took his life.
A Daily Struggle
Exposure to fungus, bacteria, and tiny microorganisms living in our air, food and water is impossible to avoid. For most, they are harmless—and usually quite helpful—but not to someone with CGD. For example, Cyrus can’t play with other kids, touch dirt, or swim in fresh water since his improperly functioning immune system will not protect him. (You can imagine how difficult it is to keep a toddler from playing in nature.)
Our plan for Cyrus is to undergo a bone marrow transplant (BMT) which we believe to be his best chance at beating CGD and ensuring him a long, relatively healthy life.
However, a BMT is a considerable undertaking requiring potent chemotherapy and radiation and can induce countless side effects for the rest of his life such as infertility.
A 1-in-40-million Miracle
The doctors were quite pessimistic about finding Cyrus a complete bone marrow match, considering his unique ethnic background—but God was watching over him.
Of the 40 million registered donors in the worldwide database, we have found one—and only one—match. This is truly divine and gives us the chance to cure our boy!
Adding Insult to Injury
As if the ordeal of his medical condition weren’t enough, this process painfully unveiled to us the hidden world of insurance gaps and limited coverage. Even with top-level insurance, the transplant costs and medications—and the potential for complications—are unbelievably high.
We pray for a complete cure for our son, but we are still planning for a world of potential side effects that could arise anytime in the future, whether it’s one month or decades after the transplant.
Your Support Will Mean Everything
Please continue to share our GoFundMe with your community and contributing any funds to help our baby Cyrus sustain his precious life through this intense procedure and potentially life-long medical journey. Everyone’s love and support has been really helping us make it through the most difficult time of our lives
Any donation amount—even $5, or $25—will make an impact in helping his life.
We are continually humbled and renewed by the outpouring of support and are eternally grateful for all the help thus far. We look forward to the day that Cyrus can fully be a part of all of our daily lives and be able to give you thanks—and hugs—in person.
Thank you sincerely from Cyrus, Chahriar, Crystal, and all of his loving family and friends.