Life is frustrating. Work is hard. Family is harder. And cars always have something wrong with them. But I can at least take comfort in being able to share my gripes with others who endure the same things.
It’s not that simple for Jennifer Cagle. Her 6-year-old son, Tanner, suffers from a disease that affects only 15 in every 100,000 people. You don’t need to be a mathematician to know that means very few people can relate with what she goes through as Tanner’s mother.
“When I tell people that my son has nephrotic syndrome, they don’t even know what it is,” Jennifer said.
Nephrotic syndrome is a kidney disease that causes the body to excrete too much protein in urine. It results in kidney damage and excessive fluid retention.
Tanner’s case is so severe that he will eventually require a kidney transplant to survive. But, because of the way his disease works, his body will most likely attack the new transplant, too.
Focusing on the present with the President
Jennifer doesn’t know Tanner’s longterm prognosis, but she doesn’t focus on the uncertainty.
“I can either mope and be depressed about it and be like, ‘Oh, poor me. Poor him.’ Or I can enjoy every moment that I have with him, especially when he is in remission because those moments can be taken away so fast. I don’t want to have regrets. And I would regret burying my head in a pillow and missing out on his life.”
Tanner is currently in remission and has been for the last several months. Although Jennifer is grateful, she knows it won’t last forever.
Her main focus now is raising awareness of the disease. She helped organize the NephCure Foundation’s first-ever walk in Dallas this past April, which ended up raising around $14,000. She has also gotten the word out by exchanging letters with President Obama about her son’s illness.
Looking for a support group
Jennifer hopes that generating attention about nephrotic syndrome will encourage more research of the disease, which hopefully one day will lead to a cure. But her efforts aren’t solely geared to that end.
She also just wants to find people to talk with about the disease.
“I want to meet other people in Texas who deal with this disease,” she said. “Maybe we could develop some sort of support group and help each other.”
Editor’s note: If you’ve personally encountered nephrotic syndrome or know anyone who deals with the disease, will you please post a comment to show Jennifer that there are other people around her going through the same thing?