Kylie’s double organ transplant

My name is Gianna Giel, I’m 22 and currently living in Elizabeth PA. I wanted to do something to help my sister out and help her raise some money, but I guess in order to be asking people for money there has be a good reason, right? I suppose what I’m really doing is here telling my sister’s story.

When my sister Kylie was born my parents knew something wasn’t right. Several doctors told them that there was nothing wrong with their baby. After fighting to see specialists, they found out that Kylie had a rare genetic condition called hyperinsulinism. This meant that her pancreas created too much insulin (think, opposite of diabetes) and so in order to (hopefully) fix this problem, at the age of 6 months old most of Kylie’s pancreas was surgically removed. When this did not work, they took out the remainder of it two weeks after her first birthday. By the age of two, Kylie had spent over six months of her life in the hospital. She had already had multiple seizures and almost died on more than one occasion. Kylie was treated for diabetes secondary to hyperinsulinism for almost 24 years. Everything changed on September 16th, 2023. Kylie came home from work and while she was eating her dinner she started having severe stomach cramps. When it became excruciating and she couldn’t take the pain any longer, an ambulance was called and she was rushed to the hospital. It was during this trip that my family learned a horrifying truth: Kylie’s liver was full of 11 tumors, and one of them was actively bleeding into her abdomen. If we had waited any longer to get to the hospital, she would have died that night.

She went through a liver ablation and biopsy, and spent nearly two weeks in the hospital. It was during this time she was recommended for genetic testing as they thought she had a disease different than her original diagnosis as an infant. I’ll spare you all the three grueling weeks we had to wait: Kylie did NOT have hyperinsulinism. She has something called glycogen storage disease 1a (GSD). This means that her liver cannot store or process sugar the way a normal person would. It meant that her liver was in even worse shape than we thought. As her sister this was very hard to hear because she had a totally different disease than the one that we all thought she had, but we also realized that her pancreas never had to be removed.

Kylie is 24 years old and she is on the transplant list, needing both a liver and pancreas to live. Kylie will be off of work for at least a year, and as her sister I feel obligated to do some thing and help her raise money. I would not only like to help her raise money, but also raise awareness for GSD. I hope you guys can find it in your heart to donate even a dollar to help my sister, who is in a really unfortunate situation.

Signed,

A sister who is heartbroken