FSGS Doesn’t Stop Teen From Developing a Future in Welding

As a mother of four, Meg will tell you not every path is the same for every child. For her youngest daughter Molly, a kidney disorder diagnosis when she was 8-years-old, could have sparked a love and hidden talent for welding that may have never been discovered otherwise.

As a young child, Molly was often sick. She would wake up with swollen eyes and had a hard time breathing. Meg, who has a background in health care, decided to take Molly to a number of specialists including a chiropractor and a reflexologist, but successful treatment and a definitive diagnosis was not made.

“I was especially concerned when Molly who was seven at the time was screaming and crying and said she wanted to go to the hospital. What child at that age tells you that,” says Meg?

During this time, a pediatrician at the Children’s Hospital of Michigan DMC, took a look at Molly who had swollen eyes, was very thin and had a swollen belly and ordered lab work promptly to see if it could help determine what was going on.

Molly was admitted to the Children’s Hospital of Michigan a day before her 8th birthday and doctors determined she had nephrotic syndrome, a kidney disorder that causes the body to excrete too much protein in the urine. A biopsy was eventually performed to determine what type of nephrotic syndrome she had.

The news was distressing. Testing confirmed Molly a serious kidney disease called focal segmental glomerulosclerosis (FSGS). FSGS is a disease in which scar tissue develops on the parts of the kidneys that filter waste out of the blood (glomeruli). It can be caused by a variety of conditions. Without treatment, FSGS may lead to kidney failure where the only treatment options are dialysis or possibly a kidney transplant.

Tej Mattoo, M.D., chief, Nephrology and medical director, Pediatric Renal Transplant Program, on staff at the Children’s Hospital of Michigan, says Molly did not respond completely to traditional or investigational treatment, including medications that reduce the amount of protein in the urine or treatment that suppresses the immune system.

Dr. Mattoo who served as principal investigator for a national research study on new treatment for FSGS, funded by the National Institutes of Health (NIH) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), says treatment can be challenging for those with the disorder.

“FSGS is not good news for any patient and yet Molly responded well enough to remain symptom free for so many years,” says Dr. Mattoo.

Molly gradually started to improve and was eventually taken off the immunosuppressive medications. Meg says her medications have been reduced from about 25 per day to about 5 per day.

“As a child with a chronic condition, Molly missed many days in school. “She is very bright, but school was challenging due to her circumstances,” says Meg.

At her high school Molly enrolled in art class and really liked it. She had a teacher who encouraged her to pursue her love of art. She discovered that she really loved working with clay. Molly went on a tour studio with a local artist who has done artwork including Mosaic tiles at Children’s Hospital of Michigan. The local artist mentioned that welding was needed to finish some of the work. Molly ended up taking a welding class during high school at Schoolcraft College and fell in love with it.

“I’m not really sure if she didn’t struggle a bit academically if she would have discovered art and welding,’ Meg says.

Molly, who graduated from high school in 2016 and has volunteered in the nephrology department in many roles including being a youth advisory committee member for the hospital, has continued to pursue her love of welding at Schoolcraft College. She has also learned about the field of welding engineering and was accepted to one of four schools in the country that offers the specialty in the Fall of 2017.

She is planning on continuing at Schoolcraft College this year and is still thinking about eventually going to Pennsylvania or other schools that offer Welding Engineering.

“I was raised to believe that a girl can excel at whatever career she chooses. Because of my life challenges I know that with determination I can achieve whatever I set my mind to. Art has given me the boost I needed to have this realization. It also directly pointed me to the welding career I wish to pursue,” says Molly.

Dr. Mattoo says Molly has come a long way since her initial diagnosis.

“I have seen Molly grow up from a sick-looking little girl to a well-rounded exceptional young lady, beautiful and ambitious, and always smiling, at least in my presence. She is bright enough to achieve anything in her life,” says Dr. Mattoo.

As for Meg, she is thankful that despite or perhaps because of the challenges Molly has faced, she has found a unique gift in welding that showcases her unique talent.

“I will also be forever thankful to the Nephrology Department including Dr. Mattoo and nephrology nurse Lena Peschansky who work tirelessly with parents and children who have kidney disease to keep the lines of communication open and help families manage their disease,” Meg says.