Music. It's one of the greatest things that humans will forever be able to share with one another. It expresses every abstract thought and feeling that cannot be put into one's own words. iTunes will donate up to 5% of all purchases to the Children's Cancer Assocation, a charity committed to transparency with an excellent record of doing the most good with its donations. So how does it work? Just buy any song that you like on iTunes through MyMusicRx.org, and you'll help a kid; it's that easy.
Hayley
I feel at
Age: 16
Diagnosis: Fabry
My STORY Last updated 10:09 a.m. 2/20/12
My name is Hayley Bivins and I have Fabry disease. My body has stopped producing an enzyme that protects all my vital organs. And about 4 years ago my kidneys started losing their proper function. So now every other Friday I have infusion treatments where the medicine I get will put that missing enzyme back into my body. I have a port and that is where they hook up the IV. I will have to do this treatment for the rest of my life. My sisters, father and grandmother have this disease as well. My dad and grandmother do the same treatments but my two sisters have not started treatments yet. They will need to some day.
Without the treatments my body is tired, my legs cramp and sometimes my feet and legs go numb. The treatment should slow the loss of kidney function. I fear one day I may need a kidney transplant. My dad and grandmother have had one. But maybe I won’t need to because the medicine will do the trick. Fabry affects all your organs. My heart, lungs, brain and the rest are at risk but Fabry is mostly known as the kidney disease.
I’m in high school and I am on my high school colorguard team. I just love doing colorguard. I look forward to practice every week and then when fall and winter competition season comes it really gets fun. So that is why my user name is GuardieGirl.
Without the treatments my body is tired, my legs cramp and sometimes my feet and legs go numb. The treatment should slow the loss of kidney function. I fear one day I may need a kidney transplant. My dad and grandmother have had one. But maybe I won’t need to because the medicine will do the trick. Fabry affects all your organs. My heart, lungs, brain and the rest are at risk but Fabry is mostly known as the kidney disease.
I’m in high school and I am on my high school colorguard team. I just love doing colorguard. I look forward to practice every week and then when fall and winter competition season comes it really gets fun. So that is why my user name is GuardieGirl.
My PHOTOS Last updated
