Help with Clara's Medical Mystery Journey

Clara is a sweet and resilient little 2 ½ year-old girl, who struggles with a group of symptoms that dramatically affects her daily life. Before Clara was even born, she suffered from growth restriction and 2 vessel cord. She was born full term, but only 4lbs. As an infant, she was diagnosed with failure to thrive without any identified cause, complicated by lack of formula tolerance (we tried over 10 different kinds to no avail).

Then, multiple pulmonary viral infections required her to be admitted to the hospital, as well as strange and profound hypoglycemia (with blood sugar as low as 13, when first identified). Additionally there are the developmental delays that all play into Clara’s growth and daily life. Clara had been admitted to the hospital every 1-3 months for some unanticipated reason (18 total admissions) since birth. She has seen over 15 physician sub-specialists with a multitude of diagnostic evaluations without any answers, just a web of seemingly disparate conditions and unexplained findings (e.g. elevated transaminase levels, failure to thrive, feeding difficulties, low IgG levels).

Within the past 3 months, we have now discovered that Clara suffers from chronic liver failure with some recent acute liver failure flares, as well as cirrhosis, from an unknown source. It has been progressing at a rapid pace, where she is now experiencing ongoing abdominal ascites, increased heart rate, low blood pressure, random spontaneous bleeding from blood clotting issues (including bloody vomit), swollen pancreas, and innumerable lesions and spots on her liver. All of this is in addition to the symptoms listed above. Additionally, her feeding issues are now so significant that she must be nutritionally maintained on TPN (IV nutrition).

These multiple problems significantly impact her daily quality of life. She is not yet walking or speaking. She struggles with vomiting on a regular basis, particularly with formula supplementation. She can physically consume a full spectrum of foods, but has such a blunted appetite that she still does not eat enough calories to sustain herself. Even then, she cannot be allowed to become hungry for fear of developing hypoglycemia. Without any unifying diagnosis or overarching treatment strategy we must remain constantly vigilant for new and unexpected problems that threaten Clara’s life.

Currently, Clara is admitted to Cincinnati Children’s Hospital for second opinions on her clinical picture, as well as a complete evaluation for a liver transplant (this is still ongoing).

We are seeking assistance to help our family adjust to this new lifestyle, living in 2 places, and for any medical expenses that may arise for Clara. For now, we are lucky enough to have good insurance through the US Army (Morgan is active duty) that covers many of the large medical bills. But we also do not know what this road ahead looks like. If we proceed with the transplant for Clara, we will have to relocate to the Cincinnati area in order for Clara to receive the best medical care available, as well as adjusting to life with a child post-transplant.

We do not know exactly what this road holds for Clara, or for any of us. But we are trying to remain strong, vigilant, and optimistic for the future.

We thank you in advance for any and all help received and wish you all the very best. Enjoy the sunshine for Clara and don’t forget to stop and smell the roses.

Clara is younger sister to Jackson (6), proud older brother who loves NASA, Monster Jam, and dinosaurs. Morgan is active duty in the US Army, and Amanda is a stay at home mom/homeschool teacher/jack of all trades. 

With Love,

Morgan, Amanda, Jackson, and Clara Barron