Stories of NF: Julianna A.

My daughter Julianna was born on August 12, 2014. She was diagnosed with NF1 at birth; she practically lived at the Loma Linda Children’s Hospital the first 21 months of her life. We would go home and she would get sick again two days later; it has been like that since she was only one week old.

At her young age of almost 5 years old, she has already had 11 MRIs, three MRAs, and three MRVs, and she just had another complete set of full body scans this past summer for a possible Moya Moya Syndrome diagnosis. She’s my little warrior.

Every time Julianna gets any of these tests, she gets put under anesthesia; my little 38 pound child has gone under anesthesia 13 times since birth. She hates the intubation the most because it hurts her throat, but she takes it like a champ.

In addition to NF1, Julianna also has high-functioning semi-aggressive Autism, she is semi-verbal but super smart, she suffers severe GERD, she has chronic gastrointestinal manifestations/issues, chronic headaches, possible seizures, chronic body pain, and has had neurological fevers that go from 97.5 to 106 degrees in a matter of minutes. This is why we’re frequently in the hospital.

In March, Julianna had a triple fix open heart surgery as a consequence of her developing cardiovascular issues because of her NF1. It was the longest 9 hours of our lives. I was so scared for my Julianna, but she is just so strong, the strongest person I’ve ever known. She goes through hell every single day and yet she is always happy, singing, dancing, playing, and running all over the place. She is incredible. Everything the doctors said she wouldn’t do when she was little she has honestly managed to prove them wrong.

Julianna just graduated from Pre-K in May and is off to kindergarten in the fall! I am one proud NF mom.