Susan's Liver Transplant Fund
We have waited for our daughter to join our family for 8 years.
After struggling with miscarriages and infertility we finally got our rainbow baby.
She is perfect in every way and we love her to pieces.
She started getting several ear infections when she was about 8 to 10 months old and we were seriously considering tubes for her ears.
The last ear infection she had was in September 2016. As the Dr was examining her he did an abdominal exam and noticed a large mass in her stomach which he stated: "hmm, that's weird."
Warning bells went off for us then and there. After an X-ray, they noticed her liver was the cause of the large mass.
They also did an ultrasound and blood work this same day.
We found in those test that her liver enzymes were elevated and that they didn't see any masts on her liver and were thinking it was caused by a virus.
We then went to see the Dr at Primary children's hospital in SLC.
She repeated the same tests her Dr did and got the same results.
More questions than answers. In January 2017 we did a liver biopsy and found that she has a rare liver disease called neonatal sclerosing cholangitis.
We were told by her Dr at Primary children's hospital that she will need a liver transplant next year.
Many of the cases we have been able to find say that this disease has been cured after doing the liver transplant, but it is rare and there isn't a lot of information.
We could really use all the help we can get to be able to afford this liver transplant.
Anything will definitely help a ton. Medical Condition Information Problem.
Sclerosing cholangitis with neonatal Details Doctor is Telling us.
Dr. Indicates she is at Risk of Infection.
And Watch for Fevers. The liver will not Improve on its own.
Her Liver has some Scaring. Treatment Plan To Keep Inflammation Low to slow scar tissue from forming.
Transplant Plan Estimated 1 - 5 years.
Depending on how fast or slow the liver damages itself over the coming years.
Liver Donors Requirements: BMI, Blood Type.
Gathering More Information Liver Information: http://www.liverfoundation.org/abouttheliver/info/transplant/
Update: 2018 - She is 2 1/2 years old and is acting like a fun little toddler. She Takes the following medicines each day. Ursodiol, 1.5 ML a day, Vitamin D, 2 ML a day, Hydroxyzine, Up to 15 ML a day Anti-Biotic 3.5 ML a Day Twice A day
#supportsusan
Update: 2019 - Getting Her listed on the Donor list and seeking live Donors. Her spleen is Enlarged due to her liver is getting worse but still at a high function.