Thomas, Julia and I have been lucky to learn that although life is not always easy, life is beautiful, especially when you have each other. Thomas and I were married in 2004 after having dated, well for forever. We had Julia in January 2009 and our world changed forever. We knew that there was a good possibility that Julia would have Thomas’s kidney disease, Alport Syndrome, what we did not know, was that she would also have Neurofibromatosis Type 1, a genetic tumor disorder with many motor and behavioral delays.
Thomas and Julia’s kidney disorder causes the little filters (glomeruli) in the kidney to break down and allow protein and blood to enter the urine. As the glomeruli break down, the kidney shuts down thereby necessitating the need for a kidney transplant. Thomas went on the donor list in 2013. In 2014 I became sick with Chronic Myeloid Leukemia, complicating our little family a little more. Late 2014, through the Kidney Connention website and a miracle, Thomas found a living donor match. On February 9th, 2015 Thomas underwent a kidney transplant and has done incredibly well since.
My Julia continues to receive care for her Kidney disease through Albany Medical center. Dr. Elisabeth Simon, has been incredible at helping us find the right medicine and dosage to decrease Julia’s protein in her urine.
As a family we have had quite a few mountains to climb, but we have also been so lucky to have incredible doctors, friends and family supporting us every step of the way. We believe in giving back to the communities that have helped us, by raising awareness and money that can then help others. Please help us to raise money for the Northeast Kidney Foundation.
You can also come out to see us on the Catwalk by purchasing tickets! Any ticket purchases will go toward our fundraising goal. You can purchase tickets here.
Northeast Kidney Foundation, Inc.
501 New Karner Road, Suite 6 * Albany, NY 12205 www.healthykidneys.org ● email@example.com ● www.kidneywheels.org to donate a vehicle
(518) 458-9697 ● (800) 999-9697 ● (518) 518-458-9690 fax
Western New York office: 22 Colvin Avenue, Albany, NY 12206 * Phone (716) 512-7918
Rochester office: 95 Allens Creek Road, Building 1, Suite 323 Rochester, NY 14618