Jackson's Journey: Battling BA
Donation protected
On July 1, 2014 my husband and I welcomed into the world our 2nd son, Jackson Fynn Circle. On August 15, 2014 with Jackson at 7 weeks old, my husband and I received heartbreaking news that Jackson had a rare liver disease called Biliary Atresia. Biliary Atresia is a disease of the bile ducts that affects only infants. The bile ducts become inflamed and blocked soon after birth. With the bile ducts being blocked, bile remains in the liver where it starts to destroy liver cells rapidly and causes cirrhosis, or scarring of the liver, resulting in liver failure.
The cause of Biliary Atresia is unknown and sadly there is no cure. Treatment for BA is a surgical procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby's own intestine, which acts as a new duct. This surgery is called a Kasai procedure. Often the Kasai procedure is not successful and does not work the way it's wanted to and babies will suffer gradual damage to the liver and the only other option is a liver transplant. BA is the most common liver disease that requires transplantation and on average is diagnosed in one of every 15,000 births.
Jackson had the Kasai procedure done on August 26, 2014 at 8 weeks old. As of today, Jackson is 60 days post Kasai and we are so happy to report that his Kasai appears to be working and doing the job it needs to do. There is no guarantee that it will continue to work the way it needs to, but we as well as our team of doctors are very hopeful that it will. We are truly blessed and feel as if Jackson's progress is a true miracle.
We have created Jackson's Journey to bring awareness to Biliary Atresia, and to help other families going through the BA battle. Not only does BA need a voice, but it needs a cure. We hope to be able to give to the much needed research of BA and to give help to BA families. Having had hospital stays with Jackson, last stay with surgery being 16 days, we know the financial hardship families endure. From meals for parents (on average we spent $60 a day on meals; at 16 days that's roughly $960! Families going through the transplant process could be hospitalized for several months!), parking (roughly $5 a day, we spent $80 our last hospitalization), medications, special formulas ( Jackson was on a formula at one point that cost $40 a can!), to everyday essentials (diapers, wipes, clothing) and not to mention the endless medical bills. Like myself, most mothers are unable to go back to work after maternity leave or have to take extended leaves of abscesences from work in order to take care of their babies, leaving most families a one income household. Having your everyday expenses as well as the additional expenses of a sick baby can leave families, much like ours, stressed and scared. We are very fortunate to have amazing family and friends who have helped us so much with our BA battle and continue to help us today. Words can not describe how touched and appreciative we are for everything we've received. From monetary contributions, to meals, to endless shoulders to cry on, we are so humbled and love each and every one of you. We know that many may not be as fortunate as we are to have such amazing support systems and therefore we want to make it our goal to help as many BA families as possibly in any way we can. Please help us give back and help other babies like Jackson. Even the smallest donation can benefit a family and can help make the difference between a bad day and a good day.
The cause of Biliary Atresia is unknown and sadly there is no cure. Treatment for BA is a surgical procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby's own intestine, which acts as a new duct. This surgery is called a Kasai procedure. Often the Kasai procedure is not successful and does not work the way it's wanted to and babies will suffer gradual damage to the liver and the only other option is a liver transplant. BA is the most common liver disease that requires transplantation and on average is diagnosed in one of every 15,000 births.
Jackson had the Kasai procedure done on August 26, 2014 at 8 weeks old. As of today, Jackson is 60 days post Kasai and we are so happy to report that his Kasai appears to be working and doing the job it needs to do. There is no guarantee that it will continue to work the way it needs to, but we as well as our team of doctors are very hopeful that it will. We are truly blessed and feel as if Jackson's progress is a true miracle.
We have created Jackson's Journey to bring awareness to Biliary Atresia, and to help other families going through the BA battle. Not only does BA need a voice, but it needs a cure. We hope to be able to give to the much needed research of BA and to give help to BA families. Having had hospital stays with Jackson, last stay with surgery being 16 days, we know the financial hardship families endure. From meals for parents (on average we spent $60 a day on meals; at 16 days that's roughly $960! Families going through the transplant process could be hospitalized for several months!), parking (roughly $5 a day, we spent $80 our last hospitalization), medications, special formulas ( Jackson was on a formula at one point that cost $40 a can!), to everyday essentials (diapers, wipes, clothing) and not to mention the endless medical bills. Like myself, most mothers are unable to go back to work after maternity leave or have to take extended leaves of abscesences from work in order to take care of their babies, leaving most families a one income household. Having your everyday expenses as well as the additional expenses of a sick baby can leave families, much like ours, stressed and scared. We are very fortunate to have amazing family and friends who have helped us so much with our BA battle and continue to help us today. Words can not describe how touched and appreciative we are for everything we've received. From monetary contributions, to meals, to endless shoulders to cry on, we are so humbled and love each and every one of you. We know that many may not be as fortunate as we are to have such amazing support systems and therefore we want to make it our goal to help as many BA families as possibly in any way we can. Please help us give back and help other babies like Jackson. Even the smallest donation can benefit a family and can help make the difference between a bad day and a good day.
Organiser
Stephan Circle
Organiser
Center Township, PA
