When Tamyara Brown of Buffalo first heard the news that her son, Ruben, was diagnosed with a rare kidney disease, she was devastated. The mother of six had to make a quick decision to care for him and she immediately chose to quit her job to be by his side.
“There is no cure for this disease, so I just decided to accept his illness and fight for him,” she said.
And so she did. Ruben was diagnosed with FSGS, a rare disease that attacks the kidney’s filtering units and causes nephrotic syndrome, a kidney disorder that causes the body to excrete too much protein in the urine. The disorder is chronic and can last for years or a lifetime. Symptoms include swelling around the eyes, in the feet and ankles, and weight gain.
“One of the symptoms is he swells up like a balloon. He has had several blood transfusions and when he was 12 he went into full kidney failure. No other medication was working and we keep battling to fix this disease,” said Brown.
But instead of crying next to her son, Brown decided to be strong. She would listen to other parents in the waiting room and take in their stories of overcoming hardship. She decided that just because she and her son were in this terrible situation together, it didn’t mean she had to give up hope. She published her first book in 2012, one of which she wrote in the hospital.
“I needed to be strong for my son and I figured if I had to lose my job, I was going to do what I love and that’s write.”
Ruben and his mom to this day are still in and out of the hospital and she’s written and published seven books since then. Her latest book, which will be released in October, is called “Broke, Lonely, Angry and Horny.”
“The idea for this book came about because I knew a lot of women in the hospital who would sit and share their stories and there were thousands of stories in that parent’s lounge. We would cry our hearts out, so I turned all these stories I’ve heard over the years into one little one.”
Brown says the biggest lesson she’s learned through this journey is perseverence.
“Don’t give up. The hospitals have support systems and you don’t have to carry all of the weight by yourself. Some of us think we have to do it all to fix it all and the reality is we can’t.”
Ruben is now 16 years old and while his life is anything but normal, he’s learned to manage his illness with his mom and siblings by his side. He also offers support to other kids battling illnesses as well.
“He knows what it’s like, so when he sees another kid struggling he befriends them and let’s them know it’s going to be OK,” said Brown.
You can purchase Brown’s books on Amazon.com.
If you’d like to meet Brown, she will be a speaker at the WNY Author Meet Up event 1 to 5 p.m. Sept. 22 at the Hyatt in Amherst. There she will share how she became a self published author and how you can, too. More information and a link to purchase tickets can be found here.
