Jude is ONE! A Journey of Hope for Biliary Atresia

Dear Friends, Family, and Supporters,

As we joyously celebrate Jude’s first birthday, we are reminded of the remarkable journey we've been on since his birth. Jude was born with Biliary Atresia, a rare liver disease affecting 1 in 10,000-15,000 infants. Over the past year, Jude has shown immense courage and resilience in the face of adversity.

From the moment of diagnosis, our lives have been filled with medical appointments, procedures, hospitalizations, and uncertainties. There is currently no cure for Biliary Atresia. The only treatment available to-date involves a Kasai procedure followed by lifelong medication management. 

At two weeks old, Jude underwent an 8 hour-long Kasai procedure at Texas Children’s Hospital under the care of Dr. Harpavat, who has dedicated his career to help improve outcomes in BA, and Dr. Vogel, Associate Medical Director and Attending Pediatric Surgeon.

We wouldn’t know for 3 months post-surgery if Jude’s Kasai improved bile flow from his liver to his intestines, preventing an inevitable and immediate liver transplant. 

From the time Jude was born until he was three months old, we held our breath.  The next milestone was 6 months, so we held our breath a little longer. And now, here we are at one year - screaming at the top of our lungs with joy and excitement that Jude has gone one full year without infection of the bile ducts, the need for tube feedings, or a liver transplant.   

We moved to the suburbs of Philadelphia when Jude was 6 months old, and since then he has been under the exceptional care of Dr Kathleen Loomes, Chief of Research within the Department of Pediatric Gastroenterology, Hepatology and Nutrition at The Children’s Hospital of Philadelphia. 

For the last 20 years, researchers at CHOP have participated in the NIH-funded Childhood Liver Disease Research Network (ChiLDReN). Under Dr. Loomes’ leadership, CHOP is a key collaborator in this Network. To date, ChiLDReN has enrolled over 2,500 participants with Biliary Atresia at 14 centers in North America.

Thanks to the amazing doctors and surgeons who dedicate their life’s work to the diagnosis, treatment, and cure for Biliary Atresia, Jude’s story is a hopeful one.   Most families are not as fortunate as we have been.  Roughly half of all infants who have had a Kasai procedure will require a transplant and 80% of kids with Biliary Atresia will require a transplant by adulthood. We are hopeful that these statistics will change as researchers learn more about Biliary Atresia to modify diagnosis and treatment.  

We are deeply grateful for the exceptional care and support Jude receives from the dedicated team at CHOP where he will continue to be a patient through at least his adolescence. Their expertise, compassion, and commitment have been instrumental in Jude's journey toward health and healing. 

Your support can make a meaningful difference in the lives of those affected by Biliary Atresia. By contributing to our fundraising efforts, you are supporting research, advocacy, and resources for families navigating this challenging journey. Jude, and every child born with BA, will battle this disease for life.  We are hopeful to find answers, treatments, cures, and causes of Biliary Atresia through research and advocacy.  

In celebration of Jude’s first birthday, we kindly ask for your generosity in supporting this cause dear to our hearts. Your donation, no matter the size, will help provide hope to families like ours, striving for a brighter future for our children.

Together, let's make Jude's first birthday not only a celebration of his life but also a beacon of hope for all those affected by Biliary Atresia. Your kindness and support will truly make a difference in our journey. 

With heartfelt gratitude,

Caitlin, Lincoln, Bode and Jude