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Hope for Jena

Carol Weber, office manager for Research and Innovations, has both a personal and professional interest in research. Watching a young family member struggle with cystic fibrosis has made her grateful for all of those who support medical research through efforts like the “Wolfpack Gives Back ” campaign. Here’s her story, in her own words:

My great-niece, Jena, was born prematurely because of complications with cystic fibrosis. Prior to her delivery there was no indication that Jena had any problems. Cystic fibrosis had not been recorded in our family’s medical history. However, as testing was to later show, both of Jena’s parents were carriers of this disease.

At birth, a blockage in Jena’s intestine needed to be removed. Before putting her back together the doctors at the University of Massachusetts Memorial Medical Center wanted to make sure that her system was working. Here was this tiny little preemie laying in her tiny bed with part of her intestine outside of her body. It would be five weeks before the doctors could put her together again. Jena is a fighter and she made it past hurdle after hurdle during her infancy. The doctors and neonatal intensive care nurses were amazed at her tenacity.

Today Jena is a robust little 6-year-old who loves dance, horseback riding and princesses. She lives in Blackstone, Mass.

Part of living with cystic fibrosis is to try to maintain the health of the lungs through treatments three times per day. These treatments involve wearing a vest that pummels her back and chest while she is breathing in medication from a nebulizer. After each treatment Jena’s body shakes for over an hour. Yet through all of this Jena remains joyful. For health reasons, Jena is home-schooled with her siblings. She is the oldest of five children and the only one with cystic fibrosis.

This spring the doctors wanted to try a new treatment: a special type of MRI that involves inhaling helium to provide much more detailed pictures of the lungs. What they hoped to see was the extent of the progression of the disease in Jena’s lungs which would help them provide better preventive care. The reason this technique had not been tried on children was that it was felt that children were too small to be able to inhale, hold their breath and hold still during the 11 seconds required to take the MRI. Jena’s test proved that this new diagnostic technique could be successful. Research led to the possibility of this new diagnostic tool.

Without generous contributions from people like those who contribute to the combined campaign, Jena’s future would look fairly bleak. Every test, every new medication, every new discovery gives us another day of hope for a cure.

Almost all of Jena’s medical care has been provided through the Cystic Fibrosis Foundation. We estimate that the medical costs to date are over $1 million dollars. Generous donors from all over the world make treatments, research and possible cures available to people like Jena for all types of diseases. I can’t thank everyone who donates, but I can broadcast a loud thank you from all of my extended family for the continued support in allowing us to enjoy Jena for another day.

Carol Weber
Executive assistant/office manager
Research and Innovations

Editor’s note: The Cystic Fibrosis Foundation (agency code 1011) is one of more than 1,000 charities you can give to through the State Employees Combined Campaign. Use the State Employees Combined Campaign online giving guide to find nonprofits that fund medical research and treatment.

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