Massachusetts parents host fundraiser to raise awareness for toddler battling rare neurological disease
SOMERVILLE - Nineteen-month-old Lucas Guo, or Lukie, has already had his fair share of challenges in life, but the young boy continues to light up any room with his infectious smile and personality.
His parents said Lukie was born with a very rare genetic disorder called ZTTK, a neurodevelopmental disease.
"He was born with this mutation in a gene that's really important for the development of many organs," Lukie's mom Ado Lio said.
Lukie has not crawled or walked since birth.
An awareness fundraiser was held for the family at Aeronaut Brewing in Somerville on Saturday.
Dozens of family, friends, and co-workers came to show their support.
"This is very rare. There are only 60 known cases in the scientific literature today. Because it was only discovered in 2016, there's not that much data about the disease, and how it progresses. So the burden falls on parents like us," Lukie's dad Nathan Guo said.
Rare Disease Day typically takes place on or near the last day of February. There is no known cure for ZTTK, but Lukie's family still wants to raise awareness about this disease.
"There are many other people like Lukie with ZTTK or just with rare diseases that also need the continued support of all the life science ecosystems in Boston. We are trying to help him by working with scientists and researchers to find a treatment and cure and do anything we can to support him," Guo said.
"He's our precious little boy, and we will do anything we can to support him," Lio said.
Lukie has already undergone multiple surgeries and has shown great perseverance.
To learn more about supporting Lukie and finding a cure for ZTTK go to their website.