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Text Box: Jenna's Journey

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Posted by:  Elizabeth Vetrano, Assignment Editor   

Created: 11/23/2007 4:35:06 PM
Updated: 11/26/2007 7:45:27 AM

Little Jenna Boguhn has always been able to make people smile, even when it seems impossible.

"She's a joy," says her nurse, Maryann Thomann. "Everybody loves her, whoever meets her."

Jenna has spinal muscular atrophy, a neuromuscular disease that rarely sees its patients past their second birthday.

"It destroys the nerves around spinal cord and leaves them unable to use their limbs," explains Jenna's mother, Mary Boguhn. "It also leads to respiratory problems and an extremely weak immune system." 

For the first five months of Jenna's life, she was a happy, healthy baby. But then, her family stared noticing some strange symptoms.

"She had a lot of difficulty eating and swallowing," says Mary. "Since its a muscular disease, she had a lot of reflux so she wasn't able to tolerate food. There was a lot of vomiting after eating."
That led to the diagnosis: SMA Type One. Type One is the most severe, with patients rarely making it to their second birthday.

"We pretty much thought it was a death sentence," Mary says quietly, "that we didnt have enough time with her."

But Jenna went on to beat the odds. She just turned three years old, and loves painting, Barbies and Barney the Dinosaur. She's also always surrounded with support from her extended family: a home team of nurses, therapists and speech coaches. 

"We're always busy," says Mary. "Some days we have speech, occupational therapy and physical therapy all in one day, and then our two other daughters come home from school and the rest of the day whizzes by."

Jenna has made incredible progress- she has a small collection of words, like Mama and Daddy, and is learning to communicate with a computer device so she can use more words. However, she still struggles with physical limitations. 

"They have a floppy head, like a rag doll," explains Maryann. "That's the best way to put it. They're very limp."

"The weight carrying her is dead weight," Mary adds, "because she has no support of her entire body. So it's getting more and more difficult to get her up and down the stairs."

That's why Jenna's parents are hosting a benefit: to build their daughter a first-floor bedroom and bathroom. No more stairs- just more room for Jenna's feeding machines and computers. Because everyone knows.. Jenna's a fighter.

"She definitely is a strong willed little girl," says Maryann with a laugh. "Very, very strong willed."

A fighter who captures the hearts, and raises the hopes, of everyone she meets.

To help in Jenna's journey, you can attend her benefit on Wednesday, December 5 at Desiderio's in Lancaster. Her parents are asking for a $25 donation, and there will be food, beverages, music, and a theme basket auction. For even more details about Jenna, visit her own webpage at and become another part of this angel's life.

Jenna's Journey





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