Father-daughter team builds website for liver donors, patients
When his daughter Cassie was born in 1997 with a liver condition called biliary atresia, Cupertino resident Simon Ho realized that a transplant would eventually be needed to save her life. The congenital liver disorder afflicts about one in 30,000 babies and has no cure.
In 2010, when Cassie was 13, Ho was able to donate a portion of his liver to his daughter. Two years later, father and daughter participated in the Santa Cruz Half Marathon and enjoyed it immensely.
The Hos also went on to found My New Liver, an organization that helps other families in their search for a donor. The free, interactive website connects users with transplant centers in the United States and offers financial help to potential donors.
“Due to the lockdown, we have had more time to develop this project,” Ho said. “This is the silver lining to the pandemic.”
As Ho discovered, being a living donor involves expenses such as travel costs, and loss of income from taking time off for the surgery.
“We want to raise funds for these incidental expenses,” he said. “Anybody can be a donor if a match is found.”
Through virtual support groups via Zoom, physicians and nurses can contribute their knowledge and expertise via My New Liver.
Many liver transplant patients are children, Ho said. “We want to provide support to them by sending care packages.”
Long before undergoing her transplant, Cassie had surgery at 6 weeks old to connect her liver to her intestines and help re-establish bile flow. As a child, her diet included a lot of beets and thistle extract, considered helpful for the liver. She also went for regular acupuncture sessions.
At school, Cassie could not participate in contact sports due to her illness, but she indulged in her passion for music from an early age after joining a children’s choir in Cupertino at age 6.
Now 23, Cassie recently graduated from the University of Washington with a degree in psychology and early childhood education. She said she’d like to pull from her own childhood experiences as she moves forward on her career path.
“I would love to be able to create a community,” Cassie added. “It would be great to meet other kids in similar situations.”
For more information, visit www. mynewliver.org.