Kawasaki Disease Survivor Dedicates Time to Helping Others Facing Illness

Meet Daily Point of Light Award honoree Kate Xu. Read her story, and nominate an outstanding volunteer or family as a Daily Point of Light.

Kate Xu is a friendly, engaged 16-year-old who enjoys reading, photography, math and science. She has extraordinary piano skills that have led her to perform in Paris and at Carnegie Hall, the latter as a result of placing in the American Protégée competition. Recently, she’s been entertaining her Husky-Malamute with the ukulele and guitar. It would be easy to overlook a fact that has had a profound effect on Kate’s life: when she was just 3 years old, she was diagnosed with Kawasaki disease (KD), a rare heart condition.

While she is on the other side of it now, her experience has led her to advocacy and volunteerism. In 7th grade, Kate found the Kawasaki Disease Foundation (KDF), the largest nonprofit dedicated to the disease that focuses on education, support and research, and she became an intern the following year. As an 8th grader, Kate used her self-taught pandemic programming skills to run KD treatment data research that landed her the highest award at the bi-county research fair.

She’s also an avid baker and has run a cookie popup program with locations across the country that raise $3,750 for the foundation. Because of her excellent work, Kate was recently promoted to KDF Youth president, unanimously elected by the KDF board, where she continues to lead initiatives that impact doctors and patients and raise awareness of the disease.

What inspires you to volunteer?

I had Kawasaki disease when I was three. I was initially misdiagnosed, and it was a very uncertain and scary process for my family. I know a lot of people go through the same experience both with misdiagnosis and feeling uncertain or alone. That’s one of the biggest reasons I volunteer — to help change that and make a difference in people’s stories, and also, to give back to the community that got me here today.

Since my diagnosis, I’ve had to go back for checkups on my heart and do echocardiograms just to make sure there’s no long-term complications. I had my last checkup last year, so now I’m officially recovered.

Tell us about your volunteer role with the Kawasaki Foundation and KDF Youth.

I’ve done a lot of social media campaigns. As the Director of Outreach, I did a lot of campaigns for awareness and presented for the KD board. And I’ve spearheaded fundraisers with nonprofits. I love baking, so in 9th grade, I started doing a baking campaign called Cookies for Kawasaki in partnership with Cookies for Cures, a nonprofit that raises funds for rare diseases.

Throughout the summer, I baked over 300 cookies and distributed over 100 bags of cookies in my community. I used part of the money raised to buy toys for Rady Children’s Hospital, where I was treated, and put the rest towards research for a cure. I also manage cookie pop ups across the nation, including some in Washington, D.C.

Now, I also manage KDF Youth, the international youth group of the foundation. We do things like lead awareness campaigns on social media. We’ve done an interview series with people who have had Kawasaki disease and try to spread awareness and connect the KD community.

How did you use your programming skills for KD research?

There’s a lot that’s still unknown about Kawasaki disease, including the cause. I wanted to use my programming skills to learn more about the disease, so I used statistical analysis and machine learning to analyze a lot of patient data like gene data and demographics. I found that, among other things, the type of KD that a patient had, incomplete or complete presentation, affected their responsiveness to IVIG, the typical first line treatment.

What’s been the most rewarding part of your work?

The most rewarding part of my work has been setting up the pop-up stand. Not only did I get to share my story, which was meaningful, but I got to hear stories from people about their own experiences with heart disease, rare diseases, and relatives with Kawasaki disease. A 74-year-old who has had heart disease since she was seven showed me her surgery scars. One girl folded her dollar into a heart before donating it. Some people were just taking time out of their day to donate, like frontline nurses.

As an introvert, it was very scary to go out there, set up in front of a Ralph’s and stop people as they walked by. I was very shy, but the more I did it, the more exciting and fulfilling it was.

Tell us about future partnerships, programs or events that you are excited about.

I’m looking forward to the Heart Walk in San Diego for people who have had heart disease. There’s also a KD symposium this year where KD doctors, experts and people involved in the KD community come together. I’m really excited for that, because KD Foundation presents every time, and hopefully KDF Youth will get to be a part of that as well.

Do you have any advice for people who might be dealing with a scary diagnosis?

I know it feels very uncertain and scary. Illness makes you feel very alone, but know that a lot of people out there are dealing with the same thing. There are whole communities out there that have similar experiences and who care about the same thing that you’re dealing with.

What do you want people to learn from your story?

The main thing is how fulfilling it is to give back to communities you care about and how important it is to share your story. Find some way to combine your passions with giving back to your communities. Even if it feels like something small, it can make a difference. Also, don’t overlook rare diseases. Something as small as donations, reposting a story or supporting organizations like KDF or Cookies for Cures makes all the difference.

Do you want to make a difference in your community like Kate? Find local volunteer opportunities.