Elora’s Craniosynostosis Surgery Fund

Our daughter, Elora, was born with two rare diseases. The first presented at birth as some brown spots on her back and head. They seemed pretty harmless but we were directed to a dermatologist for a diagnosis. It actually took nearly a year to find a dermatologist who immediately recognized and correctly diagnosed the spots. The spots are a form of mastocytosis; specifically urticaria pigmentosa. It is a rare disease caused by too many mast cells (a normal part of a healthy immune system) in the skin that produce hives or lesions on the skin when irritated. In Elora’s case the mastocytosis flairs whenever she gets a viral infection. This leads to super high fevers, febrile seizures, and difficulty breathing. Right now we can manage with an antihistamine but mastocytosis can cause life threatening complications when combined with anesthesia.

This wouldn’t be a big deal but Elora’s second rare disease, Craniosynostosis, requires surgery to resolve. Elora’s official diagnosis is unicoronal craniosynostosis, a type of craniosynostosis which occurs when one of the two coronal sutures fuses before birth. Shortly after Elora was born we noticed that her one eye was more open than the other eye. We spoke with our pediatrician and they referred us to a plastic surgeon. This doctor recommended helmet therapy. So for 10 months Elora wore a helmet (which was challenging because of her mastocytosis spot on her head.) In January of this year, at a follow up appointment with this plastic surgeon, he finally acknowledged that helmet therapy wasn’t working and referred us to Syracuse and their craniofacial center.

The surgeon we met with in Syracuse immediately recognized Elora’s issue and told us that a helmet would never have fixed her head shape. Because of her age the only option to correct her skull and prevent additional complications like vision loss or developmental delays is a surgery called a cranial vault remodel/frontal orbital advancement. The neurosurgeon and plastic surgeon create a zig zag incision from ear to ear and remove the front of the skull, advancing the impacted side and reforming the eye socket bones, hopefully allowing for the natural growth and development of a normal skull.

This surgery will present a challenge for her anesthesia team because of her mastocytosis. With Elora’s unique situation we have decided to have this surgery performed at Boston Children’s Hospital. They are the number one children’s hospital in the country and their surgeons do this type of surgery every week. Because mastocytosis and craniosynostosis are rare diseases, they have never had a patient with both undergo this particular surgery. Thankfully the anesthesia team at Boston Children’s Hospital has had many children with mastocytosis undergo other surgeries and they are collaborating with her surgeons and immunologist to help Elora have the best possible outcome for her surgery.

Elora is the sweetest and most laid back baby. She’s our sunshine baby, her happy smile is contagious and lights up the room. She absolutely adores her big sister and brother just as much as they adore her. The three of them are inseparable and full of sweet fun and shenanigans. Elora’s favorite color is purple, which also happens to be the color of the awareness ribbons for both of her rare diseases. She loves to sing and dance to baby shark, the B-52s, and the Bangles. Please keep our sweet girl in your thoughts and prayers and consider donating to help with her medical needs. Thank you!
  • Pat DeCoster 
    • 50 $ 
    • 28 mos
  • Susannah Earle 
    • 100 $ 
    • 28 mos
  • Josephine Rowe 
    • 10 $ 
    • 28 mos
  • Jim Rowe 
    • 50 $ 
    • 28 mos
  • Christina hogrebe  
    • 50 $ 
    • 28 mos
See all

Organizer

Adrianne Sorensen 
Organizer
West Meredith, NY
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