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. We called his peditrician and he was sent straight for blood work. The next morning we received a phone call to get Jace to Akron Childrens Hospital main emergency room as soon as possible. When we arrived they admitted him for further testing. Thats when we learned Jace had Biliary Atresia, a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about two to eight weeks after birth and he would need an operation as soon as possible.
Within 3 weeks, when Jace was only 10 weeks old, he received the Kasai Procedure which redirects the bile from the liver to the intestines. This procedure, along with medications and routine checkups, allows children to grow with the disease and retain fairly good health for several years. Typically 15-40% of children born with Bilary Astresia will, however, eventually need a liver transplant. Jace has been on the transplant list (living, deceased and domino) at UPMC since this procedure in 2011.
Jaces overall health has been consistently adaptable over the past 10 years and until recently has been able to live a normal life. He is on 2 medications that keep his symptoms controllable, however he has contracted colongitis which has resulted in hospitalztion, several times over the past decade. Colongitis is chronic inflammation in the liver that can lead to bile duct damage, irreversible scarring of liver tissue (cirrhosis) and eventually, liver failure. Jaces health has been closely monitored by his Aunts and Grandparents that now raise him following his fathers sudden death on July 18 2018. Jace has 5 siblings and is the 3rd oldest. While he masks his disease in public, his close family, friends and siblings know when he is not feeling well.
Jace has regular visits to Akron Childrens hospital that include, routine check- ups, blood work and ultrasounds which for the past decade have all be showing in normal range for a child with Bilarly Asresia that received the Kasai procedure. He is unable to have a “normal little boy” childhood due to his spleen and liver being swollen, as well has the fatigue, naseaua, muscle aches and brittle bones associated with his health condition… no sports or rough play, no climbing trees, no physical exersion, no contact sports or play of any kind. He loves being active and able to play however, and has found swimming to be the only phyiscial activity he can safely enjoy with other children. Swimming in warm water also helps his muscles relax at the same time. Due to the damage to his liver, Jace also has cirrhosis. Bruises that would typically take a week to heal take jace upwards of 12 weeks, he has major intestinal issues, and Jace is always cold (unless he is swimming in a warm pool) and can usually be found in a thick hoodie even on a 90 degree north east Ohio humid summer day.
Since Jace cannot do a multitude of physical activities, he finds solace in mental stimulation. He is constantly researching topics and interest and getting to know “everything he can” about a multitude of subjects, most recently insects and the solar system. He will see an insect and Google everything he can think of about it. He is constantly reading up on these subjects and adores YouTube, as most kids his age do. Jace has taken his ability to learn easily via technology a step further and has recently started teaching himself foreign languages. He has a quirky sense of humor and loves nothing more than to bring a smile to others faces, and does so with ease. The one thing Jace loves most however is to swim, especially during the summer months.
During a routine check up in March 2021 a mass was discovered on Jaces liver during an ultrasound. We didn’t know what it could be and were told at that time it was the liver rebuilding itself from the Kasai procedure. We were told the results of his testing would be sent to UPMC to be reviewed by the transplant team during our next visit since it was scheduled for March 11, 2021. The transplant team has the usual list of doctors we see during this all day event, however, this time we noticed there was an Oncologist appointment added to the list. We learned that afternoon that the spot on the utlrasound was cancer. Jace has Cancer. Specifically the type of cancer Jace has is Hepatocellular Carcenoma, commonly known as HCC. We were in shock!!! Just 24 hours prior we had the understanding this was nothing out of the ordinary and sent out for annual appointment. We cried, we hugged and we prayed together in that hospital. We havent stopped praying since. #WeFightForJace is definitely the new family motto