ISLAND FALLS, Maine — Mindy Libby knew something was off with her daughter Hannah Landry last October.
Her normally energetic and bubbly teenager, who was actively involved in sports, was acting lethargic, complaining of headaches and had a very high fever of 104 degrees. At first, the family chalked it up to the flu or some other virus, but when trips to two local health care facilities failed to generate any answers, Libby’s concerns began to mount.
“She had a soccer game the day before, but really wasn’t feeling well,” Libby said. “She tried playing through it, but you could tell she wasn’t herself.”
A variety of tests ruled out illnesses such as mononucleosis, strep throat, the flu and pneumonia. But despite local physicians telling her that her daughter simply had a virus of some kind, Libby knew it was something else.
“I just knew in my heart — I just knew something was wrong,” Libby said.
In December, the Island Falls’ family’s worst fears became a reality as Hannah was diagnosed with an extremely rare kidney disease called “C3 glomerulopathy.”
C3 glomerulopathy causes protein deposits to form in the organ. According to mayoclinic.org, glomerulonephritis signs and symptoms include: pink or cola-colored urine from red blood cells in the urine (hematuria); foamy urine due to excess protein (proteinuria); high blood pressure (hypertension); and fluid retention (edema) with swelling evident in the face, hands, feet and abdomen.
“We were told by doctors that these cases are one in a million,” Libby said.
In January, the family met with a specialist at Northern Light Eastern Maine Medical Center in Bangor, where a biopsy was performed on one of her kidneys, confirming Landry had C3 glomerulopathy.
If there was a silver lining to her daughter’s diagnosis, it was that cancer had been ruled out as a possibility. Unfortunately, there is no known cure for C3 glomerulopathy.
Since that diagnosis in January, the family has been seeing a specialist at Tufts Medical Center in Boston, and are waiting to find out if her C3 glomerulopathy is genetic or an autoimmune disease.
“There is a lot of waiting and wondering, ‘Are my kidneys dying today?’,” Landry said.
“The doctors we have talked with tell us this is so rare, that we get to places where we don’t have answers yet because it is so rare,” Libby added. “But the good news is that there is research being done on this every day. So we are trying not to lose hope.”
The family’s hope is that Hannah’s disease enters a remission period, which doctor’s tell them can last upward of 10 years. With autoimmune C3 glomerulopathy, an organ transplant may be in her future. Kidney dialysis is also likely, Libby said.
If her condition is hereditary, the chances of transplant rejection are quite high and the prognosis is not as good.
“I have to just try my best not to get sick,” Landry said.
For now, Landry is trying her best to live an everyday life typical of any other teenager. An avid lover of the outdoors, Landry enjoys hunting, fishing and riding ATVs.
She has hopes and dreams of one day entering the medical field. She has been accepted to the Northern Maine Community College’s nursing program, via the Houlton Higher Education Center, where she will start classes this fall.
Community support has been overwhelming for the family. A fundraiser basketball game, community supper and free movie at Temple Cinemas have helped with their medical and travel expenses to meet with specialists. The family has also used the services of Patient AirLift Services to fly to Massachusetts for appointments.
“I really try not to think about it,” Landry said. “I have a condition, but I am not sick.”
