Huntley woman aims to raise organ donation awareness by sharing her own story

When Huntley resident Emily Phillips found out she was in end-stage liver failure late last year and would need a liver transplant, she decided to share her organ donation journey online.

“It’s not easy to put it out there,” Phillips said. “It’s painful and scary, but it provides hope for other people.”

Usually decked out in green attire to represent the organ donation awareness color, Phillips shares the ups and downs of being on the organ waiting list on her Instagram profile @LiverDiseaseDiaries.

Phillips’ daughter, Abby Phillips, said they wanted to use the Instagram account as a hub for organ donor resources while providing insight of what it’s like for the receiver. She was inspired to share their story after finding other people around the world doing the same.

“It gave me some hope in that moment,” Abby Phillips said.

But their efforts don’t end there. Phillips and Abby Phillips aim to make a local impact by hosting an organ donation awareness event at 2 p.m. Friday at Aroma Coffee and Wine in Crystal Lake. The event will create a space for people affected by organ donations to come together and provide information on how to become an organ donor, Abby Phillips said. Secretary of State’s Organ/Tissue Donor Program regional coordinator Gavin Dillon will also be at the event to provide educational resources.

“Most people just associate organ donation with the DMV,” Dillon said. “It’s my job to advocate and educate how important organ donation is.”

More than 7 million people in Illinois are registered as an organ donor, Dillon said. There are over 4,000 candidates on the organ waitlist with 262 needing a liver in Illinois, according to data from the Organ Procurement & Transplantation Network.

Since April is National Donate Life Month, Aroma will offer $1 off a coffee all month to customers that show their organ donor status, Aroma owner Dawn Kincaid said.

Phillips, who is a mental health therapist in Huntley, was diagnosed in 2008 with a rare autoimmune condition called primary biliary cholangitis, which slowly destroys bile ducts in the liver. She is currently on waiting lists for both a deceased and living liver donor through the University of Chicago. Because the liver can regenerate, a living donor can give half a liver, which can regenerate to its full size within three to six months, Dillon said.

Dillon himself received a liver transplant about eight years ago and describes his quality of life improved dramatically after the transplant. He will also be sharing his post-transplant story at the event on Friday at Aroma.

Just hearing Dillon’s story gives Emily Phillips hope, she said. And he’s able to give insights on post-transplant life, like being on immunosuppressants so the body doesn’t reject the organ, but also managing having a compromised immune system.

“It feels like a gift you have to take care of so it takes care of you,” he said.

Phillips hopes sharing her story will inspire and encourage anyone going through similar struggles to find strength. Her Instagram page also provides links for people to sign up for blood donations, living donor donations and to simply be on the organ donor registry.

“I feel like I’m on this cliff and looking around,” she said. “But I know I’m going to fly. I’m waiting for my miracle.”