1976 Cystic fibrosis poster child now awaiting double-lung transplant

October 25, 2013

At just 6 weeks old, Vera Letendre Heuer, of Bowdoin, was diagnosed with cystic fibrosis (CF).

In the mid-70s, she became the state of Connecticut’s poster child for Cystic Fibrosis Foundation, which at that time was the official charity of the Association of Tennis Professionals (ATP). Vera’s partnership with the foundation allowed her to be a part of marketing campaigns, as well as meet the U.S. men’s tennis team.

Although she was physically limited because of CF, Vera, now 42, was determined to lead as normal a life as possible. Thanks to her medical team and organizations like CF Foundation and ATP, Vera was able to do just that. Against all odds, she married and gave birth to a happy, healthy daughter!

This is especially remarkable because, as an infant, doctors told Vera’s parents her life expectancy wouldn’t last past her teens. The support of ATP made a huge difference in terms of research and treatment for CF patients.

But now, after making a concerted effort to remain healthy, doctors say a double-lung transplant is critical to her survival, and the costs are overwhelming.

Her health has impacted her family’s life in so many ways. All the members of her family had to learn how to perform chest physical therapy. They’ve also had to limit family outings due to the possible exposure to viruses and bacteria.

The average double-lung transplant costs nearly $800,000. And that’s only the beginning. Even with health coverage, which will cover a portion of the transplant costs, she still faces significant medical expenses related to the transplant. She will need a lifetime of follow-up care and daily anti-rejection medications. These medications are very pricey and are as critical to her survival as the transplant itself.

“Vera has such an amazing story,” said Claire Prince, NFT fundraising consultant. “I think it’s awesome how the Cystic Fibrosis Foundation and the Association of Tennis Professionals were such a big part of her childhood. Now, everyone at NFT is happy to be another part of her story, as we help her raise the funds she needs to focus on her health and happiness.”

Vera with the 1976 U.S. men's tennis team; Jimmy Connors is holding Vera

Vera with Connecticut's governor at the time, Ella T. Grasso