Mooni Khalifah: Fighting the Unknown

By Anna Hoover and Mia Romano

Mooni Khalifah was born on January 18, 2003 in Saudi Arabia. Growing up, Mooni started to get sick really often. He was in and out of doctors’ offices, diagnosed with a slew of disorders, diseases, and conditions that didn’t quite seem to fit. When he was a kid, his family moved to Denver, Colorado where he was taken to the National Jewish Hospital and diagnosed with DOCK8 deficiency, a rare immune disorder causing him to have fewer immune cells than is considered healthy. DOCK8 often causes recurrent skin and respiratory infections, allergies, and asthma, and increases a person’s risk for many types of cancer. Growing up, Mooni tried to conceal his illness. “I always tried to hide it. I came up with so many lies when I got sick. I was trying to hide the truth,” said Mooni.

Mooni was the 11th person in the world diagnosed. There are around 200 known cases to this date. At the time of Mooni’s diagnosis, the only treatment was a bone marrow transplant, an incredibly intensive procedure that can cost upwards of $40,000, and is known for its large risk of dangerous complications and pain. Not only is the procedure itself risky, expensive, and physically taxing, but it is very difficult to attain -- the blood donor’s blood must fully match the patients’. Mooni’s doctors looked within his direct and extended family as well as in the world bank, and were not able to find any matches. In 2015, the National Institute of Health informed Mooni and his family that they had developed a new method of bone marrow transplant that only required a half match. This was an incredible opportunity for Mooni, as both of his parents and his older sister were now eligible to donate to him. However, at the time, Mooni was 13, and his doctors recommended that he wait to get the transplant until later, as he was at a high risk of losing his fertility.

As time went on, Mooni grew sicker and sicker. In October of 2019, his family decided it was time to move to Bethesda so that he could finally get the transplant at NIH. He began the transplant process, but then, the doctors saw something strange in his system. Mooni had Diffuse Large B-Cell Lymphoma. This diagnosis meant that Mooni’s bone marrow transplant had to be delayed once again. He would have to begin the extensive treatment of chemotherapy.

However, when Mooni was diagnosed with Lymphoma, he said: "I was excited, to be honest." He immediately told all his friends, and their sadness upon hearing the news confused him. "Why are you upset? I'm not upset!," he'd say. For Mooni, his diagnosis meant that he finally knew what he was up against; he was excited to take Lymphoma head-on. “It was a new chapter, like, I get to add this to my life. It’s a new story I get to tell.”

Mooni’s family had a harder time with the news. “They didn’t know how things were going to go,” he said. “They were scared, obviously.”

After moving to Bethesda, Mooni enrolled at B-CC, but he had to put his education on hold only three weeks in to begin chemotherapy.

Mooni went into chemotherapy with the mentality that he wouldn’t let it disrupt him. “Side effects wise, it was hard. There were times where I knew I hit rock bottom, but at the same time, I knew that there was nowhere left to go but up,” he said. .

After his first few rounds of chemotherapy, Mooni was able to return to school. Instead of hiding his illness this time, Mooni decided to challenge himself by taking an extroverted approach. “To be honest, it’s been working in my favor. I have made a bunch of friends, and still, I will go out and meet somebody new that I’ve never met,” he said. “People hear my story and they relate somehow, or through somebody, and we click.”

Mooni hasn’t let his experiences hold him back; in fact, he has used them to move forward. He feels that cancer has made him a stronger and better person, and that it has given him more empathy for others than he had before.

“Everything that I’ve been through made me who I am.” He wants cancer to be a part of his identity because it is a part of him. It has altered many aspects of his life, including what he wants to do when he’s older.

“I think I might go into nursing,” Mooni said. “I’ve met a lot of wonderful nurses, and they made feel better while I was [in the hospital], and I was like, ‘maybe I could do the same to others, because of my experience. I feel like I have a bunch of stories to tell, and many more to come.”

The month of February at B-CC will be dedicated to raising money to benefit the Leukemia and Lymphoma Society, so that those who are diagnosed like Mooni can continue to tell their powerful stories of perseverance.

As of February 10th, Mooni Khalifah is cancer free.

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