Local 10-year-old Jace Chitwood has been suffering from Biliary Atresia, a rare disease of the liver and bile ducts that occurs in infants, HCC and liver cancer for the majority of his life. These last few months have been the hardest, but the good news is that Jace has made it to the top of the transplant list. And although his family has pushed for him to live a “normal life” in every sense of the word, so much of his disease will be in the past, and he will be able to live like any other 5th-grade boy.
On August 1, the family is having a benefit dinner in his name. Meatball Subs are on the menu along with a salad, slice of cake and a cookie. The dinner will be held at the Newton Falls City Hall from 3:00 p.m. to 7:00 p.m., where a Chinese Auction and 50/50 Raffle will also be held to raise funds at this event.
Adults are just $8, children $5. Children three and under, however, are free. But, donations are always welcomed.
Who is Jace?
Jace Chitwood is just like any other 10-year-old boy going into 5th grade, only he has biliary atresia, chronic cholangitis, cirrhosis and liver cancer. He’s dealing with quite a bit -- and yet, aside from regular visits to the hospital, you would never even know!
Jace is a soldier. Although he’s constantly in pain, he rarely complains. If he gets a bruise, it can be there for almost 12 weeks on end. But, he shrugs it off like it’s nothing.
He’s always cold, so he embraces his own fashion -- rocking out in sweatpants and a hoodie -- even in 90-degree temperature. His vitamin D levels are low. So, he heads out in the sun as much as humanly possible.
The man loves to swim -- especially night swimming. He likes to run around, barefooted and free!
He’s a great big brother who loves to play with his siblings. And while he enjoys an active lifestyle, he’s restricted from sports, roughhousing and even climbing trees.
Jace is the 3rd oldest of 5 siblings. So, there are times he has to sit out.
He’s not completely lonely, however. While the others play, he gets busy with his books. He’s a natural-born researcher and loves learning about technology.
He loves knowing everything he can about everything he can. He studies everything from insects to solar systems, exploring case studies and watching hours of YouTube. Jace loves meeting new people, he studies foreign languages (he’s currently learning Japanese). And with a “quirky sense of humor,” he loves seeing other people smile.
Rumor has it, he’s also a great artist, but he’s a bit shy about showing his work.
Jace has three little kitties. Rezi, that’s the mommy, a baby named Jupiter and his all-time favorite -- the one and only, Alex Jr.
Sidenote: He once put AJ in a bookbag, ready to take him to school, because he just couldn’t stand parting when it was time to give the kittens away.
Jace was born on July 6, 2011. He was born a healthy baby. However, at 7-weeks-old he started turning a yellowish-green color. The family pediatrician was called, and Jace was immediately sent to get his bloodwork.
The next morning, the family received a call and rushed to the Akron Children’s Hospital for emergency testing. Soon after, he was diagnosed with Biliary Atresia and would receive his first operation immediately thereafter.
At just 10-weeks-old, Jace would receive a Kasai procedure, where the bile from his liver would be redirected into the intestines. This procedure, along with medications and routine check-ups, would allow him to grow with the disease and remain in fairly good health for several years.
Jace, however, would eventually need a liver transplant and has been on the UPMC transplant list ever since. And while he’s been in overall good health considering his condition, he’s recently been experiencing difficulty in his day-to-day life.
He takes two different medications. This medication has allowed Jace’s symptoms to be controlled for as long as he can remember. But, lately, this relief only goes so far.
Hospitalized several times with cholangitis, Jace’s chronic inflammation has led to a damaged bile duct, irreversible cirrhosis (scarring of his liver tissue) and liver failure. He also suffers from major intestinal issues, brittle bones, a swollen spleen, and constant nausea and fatigue.
Because of this, his health is closely monitored by his aunts and grandparents, who now raise him following the sudden death of his father in 2018. Check-ups include regular visits to the Akron Children's hospital for bloodwork and ultrasounds.
Last March, during a routine check-up and ultrasound, his doctors discovered a mass on Jace’s liver. At first, his family was told that his liver was regenerating and rebuilding itself since the Kasai procedure he had when he was younger. They were sent to UPMC for testing and to be reviewed by the transplant team. This time, an oncologist was added to the list.
As it turns out, they found a rare form of cancer called hepatocellular carcinoma (HCC). Jace has been fighting hard ever since.
What does hepatocellular carcinoma (HCC) mean in children with biliary atresia (BA)?
While Biliary Atresia is considered one of the most common chronic liver diseases to plague young children, it’s still somewhat rare and should be treated with extra urgency. The disease is a fibroinflammatory, obliterative disorder of the bile ducts with an underlying cause not yet understood by the medical community.
In infants, the bile ducts and liver are scarred and blocked. Bile can’t flow into the intestine, so it builds up in the liver and becomes damaged. With this, there’s a loss of liver tissue and function until, eventually, there’s cirrhosis.
Although incidences occur at 0.5 to 0.75 per every 10,000 live births in North America, about one in 15,000 to 20,000 babies do not have complete bile ducts. It generally presents itself with jaundice during the earliest weeks of life. Most children show symptoms of Biliary Atresia between 2 and 8 weeks.
This can occur when the bile ducts have not formed properly during pregnancy. For some, the bile ducts may have been damaged by the body's immune system in response to a viral infection acquired after birth.
According to the American Association for the Study of Liver Diseases (AASLD):
“Between 23% and 44% of children with BA survive to 20 years of age with their native liver. The likelihood of achieving long-term, transplant-free survival is increased with an earlier age of Kasai portoenterostomy in infancy, absence of major extrahepatic congenital anomalies, and presence of atresia that only affects the more proximal common hepatic ducts (with patent common bile duct).”
Cincinnati Children’s Hospital reports that “Biliary atresia seems to affect girls more than boys. Within the same family, it is common for only one child in a pair of twins or only one child within the same family to have the disease. Asians and African-Americans are affected more frequently than Caucasians.”
They add that “85% percent of all children who have biliary atresia will need to have a liver transplant before they are 20-years-old. The remaining 15 percent have some degree of liver disease. Their disease can be managed without having a transplant.”
- Jaundice − a yellow coloring of the skin and eyes due to a very high level of bilirubin (bile pigment) in the bloodstream. This is not to be confused with the jaundice most babies are born with that clears up after 10 days. In fact, most babies with BA appear to have no discoloration at first.
- Dark urine − caused by the buildup of bilirubin and a byproduct of hemoglobin in the blood, as filtered by the kidneys.
- Acholic stools − white or clay-colored stools due to a lack of bile or bilirubin coloring in the intestine.
- Weight loss and irritability
- A faster metabolism than healthy children
- Inability to digest fats due to a lack of bile in the intestines
- Loss of vitamins and proteins in the liver
The AASLD reports that the clinical status of adults with BA and their native liver can be characterized as follows:
- Cirrhosis is present in 49% to 79%.
- Portal hypertension is present in 46% to 97%.
- Esophageal and/or gastric varices in approximately 35%.
- Gastrointestinal bleeding episodes during adult follow-up in 4% to 17%.
They also report that although BA is classically associated with biliary cirrhosis, noncirrhotic portal hypertension has also been reported in adults with BA.
How Can You Help?
If you can’t make it to the benefit, here are a few other ways you can help. First, visit https://cota.org/campaigns/COTAforJacesJourney to make a donation.
See if you’re a match. You can donate a portion of your liver, and it will regenerate or grow back in just a few months.
To be a living donor, UPMC requires you to be:
- Between the ages of 18 and 55
- In general good health
- Have an unselfish desire to contribute to another person’s life in a healthy way
To learn how you can give life, visit https://UPMC.com/LivingDonorLiver, or call 412-647-5800.
For Living Donor Registration, visit https://livingdonorreg.upmc.com and find out if you can donate locally.
And finally, share this article and the information relating to the upcoming benefit. If you can’t make it and can’t donate, you may know someone who knows someone that will.
Tag #WeFightForJace on social media and show that you support him.
*City Hall is located at 612 West Broad Street, Newton Falls, Ohio 44444.