The Perfect Juliet

We welcome Juliet’s mom as a guest blogger today to share her story.

Juliet was born with lots of dark brown hair and amazing promise. Unfortunately, she was first hospitalized at just three days old. She has had too many hospital stays to count, and visits the hospital frequently for labs and to see her specialists because of Mitochondrial Disease.

On a daily basis, Juliet fights severe Hypotonia (low muscle tone) that prevents her from being able to sit, crawl, stand, walk or move independently. She also has swallow dysfunction and is fed through a g-j tube that bypasses her stomach and goes directly into her intestines.

Juliet will light up the room with her smile and laughter. She loves people, especially little children. Juliet cannot speak, but adores books. She would listen to her Mommy or Daddy read to her all day if she could (and sometimes she does!)

Since Mitochondrial Disease affects the mitochondria of the cells (the energy producers), any type of stress on Juliet’s body puts her in a dangerous situation. Juliet cannot fight infections well and is at great risk even if exposed to just the common cold! In fact, Juliet just spent 46 long days in the hospital fighting the results of a cold virus that landed her in the ICU in very critical condition for 42 of the 46 days. Juliet does not do well in the heat or cold as these are stressors as well.

Juliet presents with many symptoms, the most serious being lactic acidosis and renal tubular acidosis, neutropenia, pancreatic enzyme deficiency, cardiomyopathy, seizures, and obstruction of her digestive system. This means she often has trouble digesting her formula and it causes her great pain. Juliet’s lungs are also very compromised and she receives numerous treatments a day to keep them as healthy as possible.

Each and every day is a struggle for Juliet, which is why we need to find a cure for Mito. Juliet has taught us so much about courage. We are thankful for each day that we can share with our little angel, and why experiences like special cakes are so important to us. Linda was so kind and friendly to Juliet! We are very thankful for the time she gave to a very special experience for Juliet.

Sara’s cake was provided by Sugar Angel Linda Meers in Pennsylvania.