Mid-Missouri family radiates strength despite two kidney diseases
COLUMBIA - A mid-Missouri mother resonates hope, optimism and joy despite her family's battle with not one, but two, very rare kidney diseases.
Two weeks ago, Liz Pitzl Wages and her fiancé Jason made the nearly four-hour trip from their home in Forsyth, Missouri to the University of Missouri Women's and Children's Hospital, after they noticed their son, Riley Wages, experiencing large amounts of swelling in his face and body.
“At first, we just thought it was like a common cold or the flu or something he was getting, and then when he started getting swollen; that’s when we were like 'ok something is very wrong,'" Liz Pitzl Wages said.
It was kidney disease.
Eight years previously, Liz Pitzl Wages was diagnosed with Focal Segmental Glomerulosclerosis or FSGS a rare disease that attacks the kidney’s filtering units, causing serious scarring, which leads to permanent kidney damage and even failure. FSGS is one of the causes of a serious condition known as Nephrotic Syndrome.
Her kidneys have no function. She does dialysis five times a week in order to rid her body of the toxins her kidneys can no longer remove from her system. Her only solution is a kidney transplant, and she's been on the wait list for nearly four years.
When Riley was three-years-old, doctors diagnosed him with Nephrotic Syndrome. Nephrologist Laura Hesemann said Nephrotic Syndrome is when the body loses large amounts of protein in the urine. Protein in the urine is a sign of kidney damage and can cause damages to the kidney.
When they first brought Riley into the hospital earlier this month, Liz and Jason thought he would be diagnosed with FSGS also, but then Riley took a turn for the worst and went into acute renal failure. Riley's nine-year-old kidneys were functioning at less than 10 percent.
Doctors did a biopsy and discovered Riley most likely has an even more rare kidney disease, C3.
Hesemann said C3 is a disease that doctors have only learned much about in the past few years; it was only given a name in the last decade. She said doctors will not be absolutely certain Riley has C3 until his lab results returning from genetic testing being done at the University of Iowa, which can take 4-6 weeks.
“We know that the C3 diseases are very rare diseases and the best estimate right now is that it’s probably on the order of one or two patients per million," Hesemann said. "The fact that it’s so rare is also what makes it really difficult to treat because really rare diseases, we just don’t have enough patients that we can do good research studies.”
Riley said he just wants to get back to every day life as a fourth grader: hanging out with his friends, watching minecraft videos and playing football. Riley is the center for the Forsyth Panthers.
His mother said, "I just want my baby to be better, I want him to be his outgoing, normal self, you know and I hope once we get this under control and the medications under control he can go back to being himself and with his friends and seeing them, you know, I just want him to ultimately be happy."
Fortunately, Hesemann said some children with kidney disease can lead relatively normal lives.
"We have kids with kidney disease who go to school normally who participate in other activities and clubs and certain sports are ok," Hesemann said.
She said doctors try to get kids, like Riley, kidney transplants, which can contribute to helping with their growth, with cognitive development and from a social standpoint.
"It helps them live a much more normal life and interact with their friends on a normal basis and participate in all the things that they want to do,” Hesemann said.
Liz Pitzl Wages said she wants to praise the hospital for all of its help and support.
"We wanted to say how thankful we are to the MU Children's hospital. They have been very accommodating and compassionate. All the doctors and nurses have been so helpful and amazing," she said.
Until Riley's test results return, they have him on steroids to help stabilize him and he's doing a light form of chemotherapy monthly. Riley's kidneys are slowly regaining their strength, functioning at about 12 percent. Hesemann said, even if the test results take a while to get back, once Riley is stable and the swelling has all gone down, he will be able to return home and to life as normal.
The family has created a Go Fund Me page Raise Up For Riley asking for anyone's support, donations, positive thoughts and prayers.