Missouri City, TX
In 2011, our son, Jerry, was diagnosed with acute myeloid leukemia (AML) at three years old, and he has gone through two bone marrow transplants. Though he has been in remission since 2014, he has developed many other diseases due to the treatment and drugs, such as kidney failure, low vision, a compromised immune system, and heart issues. While Jerry was going through cancer treatment, his little sister, Lillian, was born and grew up to be a vibrant and sweet girl. Yet, in an unimaginable twist of fate, the same devastating cancer diagnosis shattered our hope.
It turns out that both Jerry and Lillian have a genetic predisposition to AML, and Lillian was diagnosed with AML in September 2020. The best treatment is to have a bone marrow transplant, but Lillian can’t find a matching donor in the U.S. and can’t get a donation from China due to COVID-19 restrictions. We have been hosting donor drives to help more Americans register as marrow donors to save kids like Lillian.
Our family joined The Leukemia & Lymphoma Society (LLS) to push for congressmen to pass more laws supporting and helping donor registration, childhood cancer research, and financial support.
Lillian can't currently attend school and has to stay away from the public, just like her brother has had to do during the last 10 years. Rare diseases are not really rare, and more people than you might think are suffering from rare diseases. No one or no family can battle alone. We need support in medical research, (blood, marrow, or organ) donor advocacy and registration, law support, and social awareness.
The pandemic has made such patients and their families extra vulnerable. Politics and discrimination have left those minority patients even more vulnerable.