Where We Stand

Luke has a rare kidney disease called Nephrotic Syndrome. It means that his kidneys are leaking protein into his urine, instead of putting it into his blood. He is extremely bloated and swollen. He has gained close to 20 pounds of fluid and carries most of it in his stomach. His medication has given him what doctors call a "moon face," or "facial mooning," which means his cheeks have swelled up and his face is very large and round. His eyes are swollen as well. There is no cure for the disease, and doctors do not know what causes it, it could have been triggered by a bad virus he had in September, but it could also be genetic. Like cancer, you can fight the disease with very strong drugs and hopefully go into remission. Relapses are close to inevitable because they are caused by viruses, colds, and infections. The only ray of hope is that he will out grow the disease before his teen years. Luke has completed his first round of drugs, a steroid called Prednisone, and did not respond, so now he will get a biopsy next week, and then try a new drug. All the drugs are very scary and have horrible side effects.

Despite all of this, Luke is the happiest guy I know. Besides some mood swings here and there (a side effect of the steroids) he laughs, plays, kisses his baby sister, repeats everything we say, dances, sings, and most important of all keeps us laughing all day long. His favorite movie is "Madagascar," and the other day he told me his breakfast was "crackalackin!" He has even started taking his medications directly, instead of hiding it in his milk. He has endured blood test after blood test, people poking and prodding him, and has proved to be a strong little 2 year old.

Please pray for Luke to be strong and continue to breeze through whatever may come next.

To learn more about Luke's disease go to http://www.nephcure.org/ or google "nephrotic syndrome"


"The pressures of being a parent are equal to any pressure on earth. To be a conscious parent, and really look to that little being's mental and physical health, is a responsibility which most of us, including me, avoid most of the time because it's too hard."

John Lennon