You are here because you have received a letter, an email, or perhaps someone passed along my name and story to you. I am blessed with a wonderful opportunity and I need your help to see it through.  I encourage you to read on and learn more of my story and explore some of the links provided.

I would also like to take this time to thank all of my family and friends for their neverending support and prayers, I wouldn't be here without all of you, I love you!!!!

I am 29, and have been living with kidney disease for most of my life. When I was 2, I was diagnosed with a rare genetic disease called cystinosis. In 1983 I got my first kidney transplant. This gift of life came from one of the most important people in my life, someone who has been by my side through many ups and downs, my mom.

At the age of 13 my transplant rejected and I started dialysis. I spent 18 months going through dialysis and the many related surgeries. I received my second transplant in the spring of 1992. This gave me a renewed lease on life.

With my new kidney my energy returned and I pursued my life goals. My genetic disease, however, progressed. The National Institute of Health accepted me into a study protocol for cystinosis.  The medicine they invented slowed down the progression of my disease.

Transplants don't last forever and my second one rejected in 1998. I resumed dialysis and treatments are three times a week for 4 hours each time. While dialysis is a life saver my health deteriorated. I endured many surgeries and several extended  hospital stays. These events have taken their toll on myself and my loved ones.  These were some very scary times.

8 years on dialysis has been difficult. My doctors express a need for me to aggressively search for a transplant. I have been on the United Network for Organ Sharing waiting list for this entire time and come to find out, I am 100% sensitized. This means I don't match 100% of my regions population. My search continued and brought me to Johns Hopkins University in  Baltimore. They have accepted me into their incompatible kidney transplant program. My cousin has generously offered to be my donor. Although, we don't match, Johns Hopkins has a protocol that will make me a match. I now have a renewed hope for a better life.

Receiving a transplant at Johns Hopkins is not without cost. I will need to relocate to Baltimore on short notice. That stay will last 6 to 8 weeks. I will be responsible for the costs of outpatient lodging, food, transportation to and from Hospital, some medical costs, and travel to and from Baltimore before and  after the transplant. My Mom will be at my side and I want to cover her costs as well as the expenses of my donor. They both will be away from work and will  have travel, lodging, and food expenses to worry about.

The National Kidney Foundation of Northeast NY has generously offered to accept donations on my behalf, manage and disperse them as needed. These DONATIONS are TAX DEDUCTIBLE and 100% of the money will go directly to cover my expenses.

If you or anyone you know would like to help...

Checks are the only way to ensure your donation goes to the correct account.

"My donation is to be used for the patient assistance of Melissa Daniels"
This will ensure that 100% of your donation will go towards my expenses..

Thank you for your time & generosity!

The National Kidney Foundation
of Northeast NY

CYSTINOSIS

DIALYSIS

JOHNS  HOPKINS

PHOTO'S

Melissa on dialysis 2006


NKF charity walk 2006
Mel's Milers


NKF pediatric XMAS party 2005

---

Friends & Family:

If you would like to Sign or View
my Guestbook, please click on
either of the links below...

Sign Guestbook View Guestbook