Justin Savilonis
Donation protected
Justin Savilonis, a student at Burnet Middle School, in Burnet, Texas, was born Dec 17, 2003 to David and Margaret Savilonis. Within a few shorts months of his life it was discovered he had Alagille Syndrome. “Alagille syndrome is a genetic disorder that can affect the liver, heart, and other parts of the body. One of the major features of Alagille syndrome is liver damage caused by abnormalities in the bile ducts. These ducts carry bile (which helps to digest fats) from the liver to the gallbladder and small intestine. In Alagille syndrome, the bile ducts may be narrow, malformed, and reduced in number (bile duct paucity). As a result, bile builds up in the liver and causes scarring that prevents the liver from working properly to eliminate wastes from the bloodstream.” (https://ghr.nlm.nih.gov/condition/alagille-syndrome).
In Justin’s case Alagille syndrome did affect his liver. It was also explained to Margaret and David that at some point Justin would need a liver transplant but the doctors wanted them to first try a biliary diversion bypass surgery which would drain the bile into his small intestine, bypassing the liver. This surgery took place in May 2005. Subsequently during this surgery his small intestine had loss of blood supply resulting in his small intestine dying, resulting in him needing to be placed on a transplant list for a new liver, small intestine, and pancreas much soon than anticipated. What was expected to be a one organ transplant had now become a triple organ transplant. On Thanksgiving 2006 they received the call that they had a donor match. This was a blessing but also came with the sadness knowing another family had lost their child. This was such an amazing gift they gave to this precious little boy and his family. For nearly a year after his transplant Justin lived in Pittsburg with his mom where he had frequent medical appointments and procedures to ensure he was not rejecting his new organs.
It was a joyous day when he got to come home. Over the years since his transplant he has had many ups and downs, frequent bloods tests, yearly biopsy tests of the small intestine to ensure he was rejecting these organs, daily gastrointestinal tube (GTube) feedings for nutrition, and anti-rejection medications.
Unfortunately, transplant patients are always at high risk for infections or other illnesses and in the last two weeks he has become very ill and has been in the hospital at Dell Children’s in Austin since May 21st , going through multiple tests and procedures. One of the tests that has come back positive is a Cytomegalovirus infection or a more commonly known as “Mono” or Epstein Barre Virus, EBV.
While a healthy person can tolerate this virus, an immunocompromised person cannot and their immune system is not able to fight it off. It also leads to a higher risk of allowing one’s body to be very susceptible to other infections. The medications a transplant patient takes comes with many potential side effects as well including Lymphomas and infections. We now know he has a serious infection and are awaiting further test results as well as more tests expected in the coming weeks.
Justin is fortunate to have a mom and dad who have protected him for many years but during times like these a parent has to choose between work and caring for a child and it is anticipated that Justin will be having months of treatment and medical care. Justin has won some battles these past few weeks, and he is a fighter with all he has been suffering with, especially the almost past two years with a very annoying reactions causing him to itch internally.
David and Margaret are selfless and do not ask for help, but it is time for us, as their village to come forth with prayer first, and monetary aide to assist with loss of income when mom is at the hospital each day tending to Justin, meals at the hospital, gas back and forth for dad, medical and living expenses. We can lift some burden from this precious family.
God Bless you all and keep this family lifted! And look for updates on this site.
In Justin’s case Alagille syndrome did affect his liver. It was also explained to Margaret and David that at some point Justin would need a liver transplant but the doctors wanted them to first try a biliary diversion bypass surgery which would drain the bile into his small intestine, bypassing the liver. This surgery took place in May 2005. Subsequently during this surgery his small intestine had loss of blood supply resulting in his small intestine dying, resulting in him needing to be placed on a transplant list for a new liver, small intestine, and pancreas much soon than anticipated. What was expected to be a one organ transplant had now become a triple organ transplant. On Thanksgiving 2006 they received the call that they had a donor match. This was a blessing but also came with the sadness knowing another family had lost their child. This was such an amazing gift they gave to this precious little boy and his family. For nearly a year after his transplant Justin lived in Pittsburg with his mom where he had frequent medical appointments and procedures to ensure he was not rejecting his new organs.
It was a joyous day when he got to come home. Over the years since his transplant he has had many ups and downs, frequent bloods tests, yearly biopsy tests of the small intestine to ensure he was rejecting these organs, daily gastrointestinal tube (GTube) feedings for nutrition, and anti-rejection medications.
Unfortunately, transplant patients are always at high risk for infections or other illnesses and in the last two weeks he has become very ill and has been in the hospital at Dell Children’s in Austin since May 21st , going through multiple tests and procedures. One of the tests that has come back positive is a Cytomegalovirus infection or a more commonly known as “Mono” or Epstein Barre Virus, EBV.
While a healthy person can tolerate this virus, an immunocompromised person cannot and their immune system is not able to fight it off. It also leads to a higher risk of allowing one’s body to be very susceptible to other infections. The medications a transplant patient takes comes with many potential side effects as well including Lymphomas and infections. We now know he has a serious infection and are awaiting further test results as well as more tests expected in the coming weeks.
Justin is fortunate to have a mom and dad who have protected him for many years but during times like these a parent has to choose between work and caring for a child and it is anticipated that Justin will be having months of treatment and medical care. Justin has won some battles these past few weeks, and he is a fighter with all he has been suffering with, especially the almost past two years with a very annoying reactions causing him to itch internally.
David and Margaret are selfless and do not ask for help, but it is time for us, as their village to come forth with prayer first, and monetary aide to assist with loss of income when mom is at the hospital each day tending to Justin, meals at the hospital, gas back and forth for dad, medical and living expenses. We can lift some burden from this precious family.
God Bless you all and keep this family lifted! And look for updates on this site.
Organizer
Marianna L. McNamara
Organizer
Bertram, TX