For the first seven months of her life, little Addilyn Hawks appeared to be a perfectly healthy baby. Born Dec. 19, 2010, the daughter of Krystin and Aaron Hawks didn’t exhibit any symptoms of liver disease until August. after tests, she was diagnosed on Oct. 11 with Progressive Familial Intrahepatic Cholestasis-Type 2, a liver disease for which there is no treatment and for which a transplant is the only lifesaving procedure.
“The doctor said she was in stage 3 of 4 liver disease,” says Krystin Hawks. The doctors at Children’s Hospital of Colorado in Aurora recommended a liver transplant.
The news was a blow for the new parents, and the prognosis was difficult to accept.
“Eventually, the liver just shuts down,” she says. “Right now, there is scarring of the liver, and it’s twice its normal size as it tries to compensate. her liver isn’t able to absorb and process fat-soluble vitamins that are crucial to growth, so Addilyn has to have added large doses of the vitamins.”
Because children with the disease are eventually diagnosed with liver cancer, Addilyn was immediately placed on the organ transplant registry. however, just a few weeks ago, a biopsy showed that she is free of cancer.
It was a good news-bad news situation.
“Unfortunately, because she doesn’t have cancer, she was taken off the transplant list,” says Krystin Hawks. “That’s the hardest part — it’s a blessing she doesn’t have cancer, but now it means that we have to wait for her to get sicker on down the line before she can go back on the list. That’s the hardest thing for us to deal with.”
Meanwhile, the Fort Collins community is rallying support for the baby and an eventual transplant through the Children’s Organ Transplant Association, a national nonprofit that organizes communities to raise funds for transplant-related expenses.
“Our target is to raise $50,000 to help with all the expenses related to Addilyn’s eventual transplant,” says Jamie Sedlak, national public relations coordinator with COTA. “These are two wonderful parents who are enjoying every moment they can with their baby,” she says. “It’s phenomenal what a support COTA can be in easing the concerns of a family facing such an overwhelming future.”
The Hawkses are currently living with Krystin’s family while they are in the process of buying a home of their own. last October, just after Addilyn’s diagnosis, the couple was forced to move out of their apartment in Fort Collins because of cigarette smoke that was drifting up from an apartment downstairs from them. “(The smoke) was a danger to Addilyn’s health, and we had to take her to a safer environment,” Krystin Hawks says.
They were eventually released from their lease, and their deposit was returned. “The problem was resolved,” she says. “Now, while we wait for a house, it’s great to have the extra support from my family.”
For the time being, Addilyn is growing and on target for normal development for a 1-year-old.
“She is a happy, beautiful baby,” says her mother. “But we can’t reverse the damage that’s already been done to her liver and know that it will eventually catch up with her. That’s a lot to deal with.”
Meanwhile, each day is filled with joy as the couple watches their little girl fight the odds.
“We depend on the support and love from our families, friends and church,” Krystin Hawks says.
“It’s interesting that you can imagine facing a situation like this and you think you couldn’t do it,” she says. “And then one day, you just have to step up and do the best you can.
“It’s amazing the strength God gives you and how important it is to be the best parents you can possibly be for your baby.”
Joyce Davis is a freelance writer who lives in Longmont. She can be reached at .