Fylicia's Liver Transplant
Donation protected
Hello! My name is Melody. This page is set up for Fylicia. She is my sister and is having a liver transplant soon. First she will have cancer spots burned off of her liver. Then she will wait to get sicker, eventually becoming weak, before she can be added to a donor list. Then she has a small window to get a match before her health is considered too late to fix. WHEN she gets the transplant she will have to take anti-rejection medications for the rest of her life.
At 18 months Fylicia was diagnosed with Gaucher's Disease. *Pronounced Go Shaz*
It is a hereditary disease that caused her spleen and liver to enlarge resulting in a splenectomy at a very young age. Please Google, Yahoo or Bing Gaucher's Disease and share it with everyone you know.
At the time of her diagnoses there was no treatment. Her life expectancy was 2-10 years. Around the age of 4 a new regimen, that was not yet approved, was tested on her. With the treatment she would have a better life expectancy, possibly making it to her teen years. She beat that and today she is 28. Boom! Take that you rare, incurable disease. Fylicia has lived a rather normal life. The entire family is very protective of her but she's got her life in her own control. Sure she needs mom once every 2 weeks to give her the treatment through her port-a-cath to survive but she's out the door and on to work or out with friends the rest of the time.
On the inside is a different story. There is pain throughout her body but she'll never offer that info unless you ask. Even then she down plays it.
I remember being in elementary school and a girl came running down the hallway looking horrified. She said my sister was in the bathroom and she was bleeding everywhere. Fylicia was rushed to the hospital and the rest is a fog. She has had a bleed countless times and each time is just as frightening as the last.
As a result of her Gaucher's she now has full cirrhosis of the liver and is waiting to be added to a donor list. Her medical bills are already high due to her genetic disease and now with a liver transplant in the works they will be even higher. The Children's Miracle Network used to assist her as a child but that hasn't been an option for years.
I am now asking the world to help in any way. If not monetarily, then by spreading awareness. We love everyone and every living thing.
At 18 months Fylicia was diagnosed with Gaucher's Disease. *Pronounced Go Shaz*
It is a hereditary disease that caused her spleen and liver to enlarge resulting in a splenectomy at a very young age. Please Google, Yahoo or Bing Gaucher's Disease and share it with everyone you know.
At the time of her diagnoses there was no treatment. Her life expectancy was 2-10 years. Around the age of 4 a new regimen, that was not yet approved, was tested on her. With the treatment she would have a better life expectancy, possibly making it to her teen years. She beat that and today she is 28. Boom! Take that you rare, incurable disease. Fylicia has lived a rather normal life. The entire family is very protective of her but she's got her life in her own control. Sure she needs mom once every 2 weeks to give her the treatment through her port-a-cath to survive but she's out the door and on to work or out with friends the rest of the time.
On the inside is a different story. There is pain throughout her body but she'll never offer that info unless you ask. Even then she down plays it.
I remember being in elementary school and a girl came running down the hallway looking horrified. She said my sister was in the bathroom and she was bleeding everywhere. Fylicia was rushed to the hospital and the rest is a fog. She has had a bleed countless times and each time is just as frightening as the last.
As a result of her Gaucher's she now has full cirrhosis of the liver and is waiting to be added to a donor list. Her medical bills are already high due to her genetic disease and now with a liver transplant in the works they will be even higher. The Children's Miracle Network used to assist her as a child but that hasn't been an option for years.
I am now asking the world to help in any way. If not monetarily, then by spreading awareness. We love everyone and every living thing.
Organizer
Melody Gilmore
Organizer
Kempner, TX
