Breathless Wonder: New Legacy of Hope for Cystic Fibrosis

Life can take your breath away. Sometimes in moments of awe and delight. Sometime with heartfelt pain. 

The San Diego Cystic Fibrosis Foundation’s Fourth Annual Ladies Luncheon managed to do both in one short afternoon. On April 5, the foundation had the distinct honor of dedicating The Leslie Petrone Hopkins Women Who Take Our Breath Away awards to five deserving women in memory of one of the chapter’s most vibrant members: Leslie Petrone of Encinitas, who passed away in October after battling cystic fibrosis for nearly five decades. In fact, Leslie celebrated her 50th birthday in the ICU of the hospital. She died two months later.

When Leslie was first diagnosed with cystic fibrosis, her parents were told not to expect her to live much beyond the age of 7. Leslie’s mom, Julie Johnson remembers that her doctor said that “If everything goes just right, maybe she can make it to eight.” Leslie was four at the time, just about to enter kindergarten. The doctor even pulled Julie aside and advised her to tell Leslie’s teachers. “That way they will be extra nice to Leslie,” she recalls. In other words, Julie was told to take her baby home and allow her to die.

Julie and her daughter had other plans. They were determined for Leslie to live. Cystic fibrosis is the nation’s leading chronic, progressive and fatal genetic disease. Affecting approximately 30,000 individuals in the United States (70,000 worldwide), the current life expectancy is only 37. Basically, a faulty protein impedes the transfer of sodium and chloride channel in the cells of the organs. As a result, thick, sticky mucous builds up in the lungs causing inflammation, chronic infections and irreversible lung damage. It also blocks the enzymes that are naturally secreted in the pancreas to break down and digest food causing malabsorption and malnutrition.

At the time of Leslie’s diagnosis, the prognosis for someone living with CF was very grim. However, despite the odds, Leslie flourished. She attended college, dedicated herself to an award-winning career and married the love of her life. She was a fighter, attacking life and her disease with courage, grace, strength and heart. Leslie’s spirit is represented in the five women who received an award in her honor:

• Stacy Monteko is often described by friends and family as “Little Leslie.” Like Leslie, she is a courageous warrior in the fight against CF. Both women were born with cystic fibrosis, but neither allowed themselves to be defined by the disease. Stacy and Leslie cherished a close friendship in the last decade of Leslie’s life. They met when Stacy took a position as a staff member of the San Diego Cystic Fibrosis Chapter. With the devastating passing of Stacy’s friend, her new job is to continue Leslie’s fight to find a cure for CF. She has taken over the reins of Leslie's fundraising team for Great Strides, the CF Foundations largest annual fundraiser. And she has set a lofty goal for herself. She wants to raise $100,000. She invites anyone to join her in her efforts as Team C.aring F.riends walks in memory of Leslie and in hope of making all her dreams come true.
• Lori Krause was introduced to the Chapter by Leslie two short years ago. Since then she has left her indelible mark. A photographer by trade, Lori has donated countless hours, over numerous weekends every year to capture the precious faces of the CF Heroes for the annual yearbook. Even in times of sadness, Lori’s work brings comfort and peace to the families of those with CF. Leslie’s mom shared that they actually propped one of Lori’s photos of Leslie at the head of their Thanksgiving dinner table this past holiday. Lori’s photo allowed Leslie to join them in more than just the spiritual sense. It is moments such as the one that Julie described that shows that Lori gives so much more than just her time and talent. She possesses a beautiful heart and generous spirit. Two qualities definitely shared by her friend Leslie.
• Jessica Goggin is the nurse coordinator at the UCSD Adult CF Clinic, where Leslie went for her treatments.  In her nomination form for this award, a
  colleague wrote of her:  “From the moment I met Jessica, I was blown away by her tremendous dedication and love for the cystic fibrosis community. In part because of her passion and her enthusiasm, I joined the UCSD Adult CF Clinic. Jessica gives of herself to the CF community opening her heart, her soul, and her home to serve these patients. Recently, Jessica went back to school for her doctorate in palliative care, with an emphasis on CF patients at the end of life. Rather than simply pointing out the needs of the community she jumps in to be the solution.” Through both her personality and her profession, Jessica mirrors the compassion and grace of her former patient, Leslie Petrone.
• Jennifer Ferguson is the mother of not just one, but two, children with cystic fibrosis. Many of us know the challenging demands of motherhood. We also know its blessings. Image the courage of a mother with two children with cystic fibrosis. The daily care, the hours of treatment, the organizing of numerous pills and medications, and the listening for coughs in the middle of the night. Jennifer does all of this, and more, for Ashton (10) and Lola (5). Jennifer and her kids are always a phone call away when the Foundation needs a speaker to education a company, school or community leaders about cystic fibrosis. She heads a walk team for Great Strides, rides in the annual Cycle for Life bike tour, and supports nearly all the events, usually with new faces in tow. Like Leslie, Jennifer exhibits endless energy and an uncompromised belief in her quest to find a cure for cystic fibrosis.
• And finally, most people embedded in the fight to cure CF do so because they have a loved one who is touched by the disease. But there is a special inspiration that comes from someone who chooses to join this cause – not because they have to, but because they want to.  Mary Durfee and her family is one of the biggest supporters of the San Diego’s Great Strides program. She started walking with Sean’s Superstriders, lead by team captain, Katrina Young, in 2004. As a mother of four boys, scheduling one day to walk together is no easy task, but Mary is passionate about curing this disease for Sean and others. Through her efforts, Sean’s Superstriders received a single donation in 2010 of $50,000. Mary renewed that donation again the following year by an additional $5,000. When asked why she and her family feel this commitment to CF, Mary will tell you that CF strikes a large chord in their hearts. It is not just the donations that Mary raises for the research. It is the heart and soul that fuels all her efforts. Mary clearly represents all the love, beauty and grace of Leslie.

Walking into the Estancia La Jolla Hotel, I was certain that Leslie would make her presence known in some extraordinary way. After all, Leslie was larger than life in the real world. However, in death, Leslie showed herself subtly in all the small details of the afternoon. She was in the smiles and the laughter. She was in the tears shed in her memory. She was in the $35,000 raised for CF medical research. And she was in the quiet moments of friends enjoying an afternoon together. A fitting memorial. 

Leslie loved her girlfriends. In fact, at her funeral, it was remarked that if you were to fill up an entire room of Leslie’s friends, all of them would claim to be her best friend. And all would be right. In every sense, Leslie was everything to everyone. Leslie charged through life with strength, determination, courage and sheer grit. But, she softened our hearts with her warmth, kindness and unwavering sense of faith. She was the living, breathing embodiment of her own mantra: Believe Anything Is Possible. Leslie never stopped believing. And in her honor, the CF Foundation will continue to keep on fighting and believing in hopes that no one else has to lose a friend or loved one to this insidious disease. Recently, there has been amazing progress in developing new drugs and treatments to combat the disease. In addition, the CF Foundation now has five new ambassadors. Stacy, Lori, Jessica, Jennifer and Mary not only represent all that Leslie stood for, they carry forward all the hopes and dreams that she envisioned for herself. Proving that a disease the steals away one’s breath in slow, caustic steps, can also leave us breathless with all the hope and love and support showcased in one beautiful afternoon.