Fighting for One Son, Hoping to Help Others

by Brian Orton

 Almost exactly one year ago, I walked across a bridge, and I burned it behind me. No turning back, I was fully committed.

The "bridge" was a promise I made to my firstborn, then only ten months of age. We had just come home from Children's Hospital in Seattle, having learned of our son's disease, minimal change nephrotic syndrome (MCNS), and I held him in my arms and told him "I will love you through all of the battles we have ahead of us, and I will fight this disease for you."

And almost since the day we brought him home, that is what I have done. I have fought the medical community's resistance to "outside of the box" thinking in regards to this disease, why it plagues my son, and why there is no known cause or cure for Nephrotic Syndrome. I have fought their insistence that Prednisone is the savior to my son. And I have fought long and hard alongside others to start something that has never been done before in glomerular disease research, in essence turning a vision into reality: launching a globally recognized research foundation that might someday initiate and sponsor the research that cures my own child.

Today, that vision has become a reality, and that vision is the NephCure Foudation. Through the efforts of a very committed group of giving individuals, we are together making a difference in the war against glomerular disease. Below is our story.

Our son was born nine pounds in February of 1998. He was always big, but as the months went by I noticed he looked "chunky" to me. I asked my mom: "do you think this is normal? Is this what they call baby fat?" She'd make me feel better by saying yes, but I always wondered. Something just didn't seem right to me.

When Christian was nine months old, an alarm went off: he began waking in the mornings with swollen eyelids and swelling in the area around his eyes. It was obvious to us he needed to see a doctor, and we did. The pediatrician was quick to confirm allergies, and prescribed medication to ease the symptoms. Little happened though in the weeks following, and, although the swelling would be gone by mid-day, he was still waking up with swollen eyes.

About three weeks later, we took him back to a different pediatrician for a second opinion. Despite our insistence that the swelling around the eyes was not normal, and that his "chunky" appearance had us a bit concerned, he told us Christian looked like a healthy young boy, and that was it. In telling the doctor that I was not satisfied with his assessment that everything is fine, he said: "you're welcome to seek another opinion, but they'll just tell you the same."

That night, while giving our son a bath, he wasn't himself. He wasn't playing in the water, wasn't making any sounds, and literally seemed in a daze. He hardly responded to us, and looking at him more closely - especially with his clothes off - we saw obvious swelling around his belly and sides. His body looked almost pear shaped, and I told my wife "something is really wrong. We need to make some calls."

Children's Hospital in Seattle diagnosed Christian with Nephrotic Syndrome at 4 a.m. that morning. The standing emergency room doctor took a look at him, got some test samples, and came back to us with almost no doubt in his mind that our son was very sick with Nephrotic Syndrome. He told us to prepare for a long road ahead, and a biopsy was scheduled. We stayed in the hospital for almost a week thereafter and, thankfully, his biopsy revealed no scarring in the sample taken from his kidney.

It is with purpose that I am not sharing many of the details of our hospital stay, for it is just too hard for me to get through. I cried my eyes out during that week, and I can hardly hold back the tears now as I revisit that time. Never will I forget the feeling of being broken as I watched my young son struggle to recover. He was so swollen that doctors were concerned his skin would break if he swelled further. His IV's were administered through his head since nurses - because of the swelling - could not find veins in his hands and feet, and they tried over and over and over again while he screamed with each poke of the needle. And handing our son over to the nurse as the biopsy surgery began was about all my wife and I could take.

But God has blessed our son in the twelve months since his diagnosis almost exactly one year ago. Yes, Christian relapsed three times this year, and we wish this had not happened. But he weathered each relapse very successfully, and we know they could have been so much worse. Further, while we are so thankful that Christian responds to Prednisone, we tested several naturopathic alternatives on him in his last two relapses - and they worked! Doctors sneered at the idea, but they worked in two separate instances where his tests had reached levels of plus 4 proteinuria -- and further, he responded more quickly on his "naturopathic cocktail" than he did when we used Prednisone!

Why our son responds to Vitamins C and B5, Quercetin, Coat's Aloe Vera Juice, and children's Benadryl is something I cannot explain. And why he has weathered both a cold and four different inoculations without a relapse in the last three months, I don't know.

What I do know is that we pray for our son every day, and those prayers have been answered. Today, he is a happy, healthy little two-year-old boy who is thriving. Tomorrow may be different, but today... today he is healthy.

Join us in our efforts to make this foundation a success, won't you? Talk to your friends, family, employer, and doctors about this organization and what we can accomplish in the coming years for your children and mine and consider supporting our efforts financially with tax-deductible contributions. Without financial support for the research we wish to initiate, it will be a tough road ahead for all of us who want to end glomerular disease.