Sonia Valentine - "FSGS Through the Eyes of a Loving Grandmother"

"My grandson Noah arrived on February 20, 2003 -- 7 pounds, 9 ounces, healthy, strong, and perfect. For the first many months, we reveled in all the moments that you would expect. We marveled as Noah found his smile, giggle, fingers, and toes. We helped with bathes in the sink and walks in the stroller.

But as Joan Didion wrote in The Year of Magical Thinking,

Life changes fast.
Life changes in the instant,
The ordinary instant.

For Noah, and for all of who love him, that ordinary instant was a morning in January 2004 when Noah woke up with puffy eyes. After a trip to the doctor's office and some tests, the doctor discovered protein in Noah's urine -- a sign that his kidneys had suddenly stopped working as they should.

By the time Noah was fourteen months, the ordinary moments we expected had been replaced by talk of nephrotic conditions an by the grief of watching our small grandson swollen and exhausted from failing kidneys and powerful medications. The doctors suspected that Noah had one of three conditions -- each slightly worse than the next. Based on Noah's reaction (lack of reaction) to medication and the result of a kidney biopsy, the doctors diagnosed Noah with FSGS (Focal Segmental Glomerulosclerosis), a scarring of the kidney filtering function that can lead to kidney failure.

In 2005, Noah returned to Boston Children's Hospital. That year was an unforgiving one for Noah and his parents. He spent four months in the hospital, including scary periods in the intensive care unit when fluid in his body compromised his ability to breathe on his own and stressed his heart. By the end of March, Noah lost his kidney function.

Without functioning kidneys, Noah depends on dialysis. Each night, Noah undergoes twelve hours of dialysis - an often painful exchange of fluid through a catheter in his abdomen. The dialysis takes off the fluid that has built up in Noah's body during the day. Because fluid only leaves his body through dialysis, Noah can only drink about 15 fluid ounces a day. Any more than that send his blood pressure soaring and adds dangerous amounts of retained water. He is always thirsty and always asking for water. If you visit, you will probably hear him demand, "Three big ones and one more after, " referring to three little plastic medicine cups with 1/3 of an ounce of water in each cup. Children on dialysis do not grow without growth hormone injections. Noah receives a shot each day.

We hold tight to the ordinary moments. Noah celebrated his third birthday in February. For the first time, he was healthy enough for a party, and so we had a giant one - complete with a life-size Darth Vader that talked, balloons, cake with blue frosting, party, horns, and cotton candy. Amazingly, given all he goes through each day, Noah remains happy and feisty. He is a real character. His mind is sharp, and he looks at the world with the greatest sense of humor - never missing a joke and always making people around him simile. He has a wide range of interests - from sharks and dinosaurs to Harry Potter and Star Wars; from the Wiggles and Mary Poppins to Kelly Clarkson of American Idol; from tricycles to snowmobiles and tractors.

A transplant may be in Noah's future, but FSGS may recur after surgery - maybe within hours after the transplant. And so, we wait and hope.

It's no secret. We believe in miracles. I am a living example of a medical and spiritual miracle. I live dialysis-free thanks to a new kidney from a dear friend. We expect to share many common experiences with our grandchildren. Illness is not one of them. But if Noah and I share kidney failure, then I believe that we will share a miracle as well. "

Sonia Valentine
Noah's Grandmother