My Story by Elysia Camp

Leonora was born at home at 42 weeks after a normal pregnancy and no indication of anything being wrong. Immediately after birth, she needed oxygen, and we knew something was wrong. After a couple of hours, her blood sugar plummeted, and we were rushed to the hospital. They admitted us for observation for 24 hours. We ended up staying for 7 1/2 weeks.

Finally, at 13 days old, Leonora was diagnosed with a rare genetic disorder, Panhypopituitarism, and adrenal insufficiency, a condition in which the production and secretion of all hormones by the pituitary gland are reduced. The lack of any hormone output in the body is due to an underdeveloped/ nonfunctional pituitary gland. No fight or flight, no cortisol, and no thyroid–all necessary for our bodies to control blood sugar, regulate body temperature, and live. Leonora will be on hormone replacements for the rest of her life. Right now, that includes hydrocortisone (that has to be increased when there is any stress to the body, good or bad!), thyroid medication, and a daily growth hormone injection. We also carry emergency medication, Solu-Cortef, on us at all times in case of an adrenal crisis. Before we left the hospital, Leonora had a g-tube placed because she wasn’t able to take a bottle or nurse effectively and had a hard time gaining weight. 

Over the past nine years, Leonora has been diagnosed with a bicuspid aortic valve, a submucous cleft palate, obstructed and central sleep apnea, Chiari malformation, skew foot, hypothalamic obesity, and sensorineural hearing loss. It’s been almost four years since she’s had brain surgery for the Chiari. Her neurosurgeon said a “significant Chiari” is between 7-9mm, and Leonora’s was 20mm. She had massive headaches 5 out of 7 days a week, making her physically ill. She’s been through physical therapy to learn how to walk, and now she runs. Her g-tube was removed a year after it was placed because she learned how to eat so well. She’s been through 6 surgeries, countless tests, MRIs, CT scans, blood draws, bone age scans, and has physical therapy and occupational therapy four times a week.

These days Leonora loves baking and playing with her sisters. She loves swimming and the beach. Her body gets worn out easily. Any excitement takes a lot out of her. But she’s the happiest girl with a hysterical sense of humor and a heart that loves fiercely. Her favorite made-up saying is, “happy is best!” And she lives that fully!  

Though she be tiny, she is fierce!

Guest post by Elysia Camp, Rare Mama to Leonora