Sami's Medical Expenses
Donation protected
My name is Elizabeth Heller and I have set up this GoFundMe for my friend Jennifer Johnson and her family who are in Ballston Spa, New York. They are in extreme need of help with medical expenses for their daughter Samantha. Below is Samis story written by Jennifer. From the bottom of our hearts we thank each and every one of you for anything and all you can do in this time of need.
UPDATED FEB 2015: Sami has gone to NYC and had another liver biopsy done that shows scarring on her liver which indictates beginning stages of liver failure. The NYC specialists have thrown their hands up becasue they can not figure out what is wrong with her. She has been in the hospital the past week getting worse and worse. They need to get her to another specialist that is out of state a their insurance has denied this. WE NEED HELP NOW!!!!! EVERY DOLLAR COUNTS, EVERY PENNY....PLEASE we are BEGGING YOU, please help SAMI!!!
In March 2012, after bouts of abdominal pain, nausea, and just feeling ill in general, our 12 year old daughter Samantha was diagnosed with Biliary Dyskinesia which resulted in gall bladder removal surgery. It seemed to help. Over the next two years she did well as long as she was careful with her fatty food intake and only had a few episodes of abdominal pain.
In 2013 she had been in the emergency room a few times for the similar symptoms, but nothing was ever found. In November of 2013, she had become very ill and was hospitalized. The pediatric GI team were “stumped” I was told, so they called in teams of Drs to cover other systems of the body and gave her an entire work up. They called it “the gold star treatment”..nothing. Even an infectious disease team cleared her of everything they could think of. The hospital kept her hydrated, managed her pain and nausea, and eventually sent her home. The episodes of pain, nausea, dizziness, itching without rash, elevated liver enzymes, etc.. kept coming. Samantha was in and out of all the local hospitals. Still no one really knew what was going on, but they thought the issue was in her liver.
After a long struggle with her medical insurance company about trying to take her to Boston Childrens Hospital, which was the recommendation of all the drs, we had to stay in-state. So we found a pediatric liver specialist in New York City and after weeks got an appointment. He ran some imaging scans and found the common bile duct was spasmed shut. Ssphincter of oddi dysfunction was the diagnosis since it was only one duct. We scheduled a second trip to NYC for a procedure called an ERCP to cut open the bile duct to allow bile to flow again. For 8 months she was well!!
In November of 2014, she got very sick again. After weeks in and out of our local hospital and emergency rooms, they again said she was fine but I knew better. So I had them send her labs and scans to the Dr in NYC. He found a stricture of a different bile duct on the left lobe of her liver this time. He told the local dr taking care of her during a hospital stay, he thinks it may be Primary Schlerosing Cholangitis! It is a chronic condition, the cause is still unknown. PSC is very rare, especially in pediatric cases. It can cause bile duct cancer and liver failure. Most patients need a liver transplant within 10 years of diagnosis and have an average of 25 years from that point. My daughter is 15 years old!!! She just wants to go back to school where she was recently accepted and inducted into the Sponsor a Scholar program with big plans for college and her future. She just wants to be a "normal" kid again!!!
In order to get a diagnosis and treatment, we need to travel again the 4 ½ hours to NYC to have another ERCP and liver biopsy done. The continuous medical and travel expenses from over the past couple years have caused us to now struggle with coming up with the money for this and future NEEDED trips as well as the possibility of a Liver transplant.
UPDATED FEB 2015: Sami has gone to NYC and had another liver biopsy done that shows scarring on her liver which indictates beginning stages of liver failure. The NYC specialists have thrown their hands up becasue they can not figure out what is wrong with her. She has been in the hospital the past week getting worse and worse. They need to get her to another specialist that is out of state a their insurance has denied this. WE NEED HELP NOW!!!!! EVERY DOLLAR COUNTS, EVERY PENNY....PLEASE we are BEGGING YOU, please help SAMI!!!
In March 2012, after bouts of abdominal pain, nausea, and just feeling ill in general, our 12 year old daughter Samantha was diagnosed with Biliary Dyskinesia which resulted in gall bladder removal surgery. It seemed to help. Over the next two years she did well as long as she was careful with her fatty food intake and only had a few episodes of abdominal pain.
In 2013 she had been in the emergency room a few times for the similar symptoms, but nothing was ever found. In November of 2013, she had become very ill and was hospitalized. The pediatric GI team were “stumped” I was told, so they called in teams of Drs to cover other systems of the body and gave her an entire work up. They called it “the gold star treatment”..nothing. Even an infectious disease team cleared her of everything they could think of. The hospital kept her hydrated, managed her pain and nausea, and eventually sent her home. The episodes of pain, nausea, dizziness, itching without rash, elevated liver enzymes, etc.. kept coming. Samantha was in and out of all the local hospitals. Still no one really knew what was going on, but they thought the issue was in her liver.
After a long struggle with her medical insurance company about trying to take her to Boston Childrens Hospital, which was the recommendation of all the drs, we had to stay in-state. So we found a pediatric liver specialist in New York City and after weeks got an appointment. He ran some imaging scans and found the common bile duct was spasmed shut. Ssphincter of oddi dysfunction was the diagnosis since it was only one duct. We scheduled a second trip to NYC for a procedure called an ERCP to cut open the bile duct to allow bile to flow again. For 8 months she was well!!
In November of 2014, she got very sick again. After weeks in and out of our local hospital and emergency rooms, they again said she was fine but I knew better. So I had them send her labs and scans to the Dr in NYC. He found a stricture of a different bile duct on the left lobe of her liver this time. He told the local dr taking care of her during a hospital stay, he thinks it may be Primary Schlerosing Cholangitis! It is a chronic condition, the cause is still unknown. PSC is very rare, especially in pediatric cases. It can cause bile duct cancer and liver failure. Most patients need a liver transplant within 10 years of diagnosis and have an average of 25 years from that point. My daughter is 15 years old!!! She just wants to go back to school where she was recently accepted and inducted into the Sponsor a Scholar program with big plans for college and her future. She just wants to be a "normal" kid again!!!
In order to get a diagnosis and treatment, we need to travel again the 4 ½ hours to NYC to have another ERCP and liver biopsy done. The continuous medical and travel expenses from over the past couple years have caused us to now struggle with coming up with the money for this and future NEEDED trips as well as the possibility of a Liver transplant.
Organizer
Liz Heller
Organizer
Paradise, NV