When Yang Siyang learned his eight-year-old Lillian has the rare childhood cancer acute myeloid leukemia, he felt overwhelmed by shock, grief, uncertainty. There are many intense and complicated emotions that come with learning your child will be living with a rare illness.

 But despite the incredible rarity of the diagnosis, she was in a house of experts. Lillian’s older brother Jerry had received the same diagnosis of this type of AML in 2012, an anomaly the doctors weren’t expecting.

Siyang explained,

Growing up, Lillian had seen her big brother go through the tedious process of the disease, receiving a bone marrow transplant, recovering, and adapting to life immunocompromised. So at age 6, she was already an avid jokester, practiced in prayer, and had a strong relationship with God. Lillian’s treatment would mean finding a bone marrow donor to replace her leukemia cells with healthy ones, who would match her to a range of genetic markers. This can be tricky– Lillian was having a hard time finding a match.  The disparity in Asian participation in the registry got the attention of her parents.

They noticed that while white patients had a 77% of finding a match, people of color had far less luck.

As they searched for a donor for their kindergartner, the family realized finding Lillian a match would mean expanding the registry to include a richer array of cultures and races. They wanted to create a more diverse registry for her and the many other minorities searching for a match.

 In the rare community, families often discover if they want change, they have to make it.

 So they made Donor4Lillian to spread the word and got their community signed up.

 Acute myeloid leukemia is a type of rare blood and bone marrow cancer.  People with the condition have bone marrow that produces abnormal blood cells, which can crowd out the healthy blood cells, making it hard for blood to circulate and do its job. This causes fever, bone pain, fatigue, shortness of breath, pale skin, frequent infections, easy brushing, and unusual bleeding. The cancer is caused by damage to the DNA that develops cells in bone marrow, causing the cells to develop into leukemic white blood cells.  There is treatment including remission induction therapy to kill the leukemia cells, and consolidation therapy to get rid of any that remained. Others include chemotherapy, drugs, and stem cell transplants.

Lily and her parents began to advocate for people to sign up, spreading the word about the registry.

Siyang explained that Lily’s optimism helps her to cope. Years of praying and remaining strong taught her how to find humor and light in her situation. Her parents describe her as very brave, saying that her prayer makes her less worried and afraid.

 Lily’s charisma does well in front of a camera, and her videos help her pass the long hours in the hospital.  Her bravado got her on Good Morning America, with the same humor she used to get herself and the nurses through the painful part of recovery. On the show, they featured some of the clips Lily recorded at the hospital to help them advocate.

 He said, “So the interview goes and Lily and told them a joke. She’s really relaxed to tell jokes when everyone in the hospital’s having chemo. So she’s probably the most popular kid on that floor. So then they broadcast her joke video together with an introduction by her Mom. ”

Her appearance on the show got traction, with over 500 new members of the public registered within 24 hours of the clip broadcasting.

As Asian-Americans, Lillian and Jerry need matches with certain similar gene patterns, usually someone of a similar background. For them, someone of Asian decent too.

Siyang explained that can be complicated— especially for people from ethnic minorities in the US. While a white patient has a 77% chance of finding a potential match, comparatively, an Asian patient has only a 40% chance, and for the Black community, only 25%. At times, the disparity reflects other inequalities in our health care system.

He’s on a mission to spread awareness and get a wider array of the community registered. He’s spreading how easy it is to sign up, and how it can be a way to help uplift one’s ethnicity and the great need.

Siyang explained that the different minority groups have different barriers causing inequality. It’s not only that these racial groups have lower populations in the US, but they’re also less likely to be registered for the bone marrow registry.

One reason is simply that they have not been provided with the proper information on how to register, and what signing up to be a donor means. The DSA had surveyed the public about their knowledge on donating, and they found that most people had misconceptions about what registering entailed.

He said, “For example, they thought the bone marrow donation registration needs to send in the blood samples, but really, it’s just swapping the cheeks. “

For patients of Asian roots, only 2% of the Asian-American population is registered for the donor base. This implies a match may be out there, and the person may even willing to be a donor, but their information isn’t available. During the pandemic, patients have also been cut off from potential matches from overseas, preventing Lillian from using a woman in China.

For Black cultures in America, that in part comes down to history.

The Black community in the US often has mixed backgrounds, and often don’t know the exact place of their roots; leading to diverse and often unknown genetic makeups.

COVID has introduced new barriers, as health facilities have been increasingly inaccessible, and health professionals are increasingly occupied. Without community spaces to spread awareness and collect samples, they had to adapt collection methods. Still, they managed to adapt and organize drives anyways. But this time, the drives were drive-thrus. The entire process takes about five minutes, and participants don’t even need to get out of their cars.

They’ve hosted these in Houston and two more in California, and they’re still trying to host more.  They’re also trying to get international donations available again, which would have let Lillian have explored an option with a potential match in China, that due to COVID-19, was off the table.

Siyang and his family have learned that dealing with a rare disease means measuring success and failure differently and accepting the uniqueness of their situation. They can’t be concerned with what others are doing. They are just grateful for the support as it comes.

Siyang recognizes the strength of the love of the community, who helps them when their plate gets too full. He mentioned how friends have helped with repairs, bringing dinners, doing what they can whenever they’re in the hospital.

 He said,

For Siyang, while now he’s focusing on his two children, he realized the need was bigger. His experience has broadened his efforts to advocate for policy on behalf of the entire community, who need holistic measures to help the many individuals who will be in his same situation one day. That means policy and bills that can open doors and recognize the great burden put on rare disease families all over the nation. Because rare diseases are by definition, too few to get the support of private companies and the pharmaceutical industry, they need the assistance of the public administration to get the job done.

He said, “Rare diseases mean there’s no private company that can do it, so you really need the government and also the public to get involved to battle together, because you never know when this will happen. These diseases only attack a few people, but it’s a random attack. And once they are attacked, they’re almost hopeless without help from everyone else.”

As a result, he doesn’t draw lines between his children’s experience and the needs of the greater American public. According to him, he takes it in its entirety. He knows that there must be education, registrations and events, but also legislation from the government.

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Siyang’s struggles have not soured his gaze— rather he affirms his gratitude for the love and support of the community whenever he had the chance.

He said, “It’s really like a sharing the love and sharing the faith. The community saw how we are coping with this, and we feel they are supporting us and trying to do whatever we can do.”