Jenna’s Story

Site created on January 6, 2021


Jenna Louise was born with a rare craniofacial disorder where the bones in the head fuse prematurely. Surgery is often required to expand the skull and face. This causes a lot of problems as the head and face continue to grow. If this goes untreated it could opens the future to a lot of problems with brain growth, loss of vision, hearing and breathing issues.

Jenna has 2 surgery’s already planned before she turns 1.
She may need more surgeries after that by the way her head develops. Jenna isn’t the only one this has happened to because this condition is caused by a genetic mutation it has a 50/50 chance. Her mother Sarah was born with this condition as well as her Grandma and aunt and cousin.
It seems to jump every other as Sarah has an older sister and her own first born son that neither have shown any signs of the mutation. As her aunt has it also where her oldest child doesn’t but her daughter did as well.

Please keep Jenna and her family in your thoughts and prayers as she starts this journey to becoming a beautiful Adventurous little girl that lets nothing get in her way.

Newest Update

May 12, 2021

Journal entry by Sarah Jeske —

Time goes by so fast, back in February Jenna had this life changing surgery and over time she grew and delt with battles with teething and trying to crawl and roll while having this thing on her head. 

Today was the day that they were removed, it all happened so fast with her development that she had her follow up appointment last week and bam here we are.
Originally it was scheduled to be a 2 hour surgery and turned into 4. There was some worry that because she was showing signs that she was breathing hard as if she was almost gasping for air that they felt they would put her in a coma like state and help her breathe by machine for a little. 

Eventually that changed and she’s doing great! I couldn’t be more proud of her and her strengths! 

 she did wonderful. 


Read More of the journal titled "May 12, 2021"
  • Before surgery this morning.
    Before surgery this morning.
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