OSWEGO, NY – Lena doesn’t really know that she’s sick, or what the disease she has actually is. However, Cystic Fibrosis is threatening her life; and she isn’t even 3 years old yet.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide).
A defective gene and its protein product cause the body to produce unusually thick sticky mucus that clogs the lungs making it difficult to breathe and leads to life-threatening lung infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Currently there is no cure for CF.
“In the 1950s, few children with CF lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF,” said Lena’s grandmother Kathleen McCarthy-Vibbert, co-chair of Leaps for Lena Great Strides Oswego Walk.
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure.
The Great Strides Walk will be held in Breitbeck Park on May 19. Registration starts at 10 a.m. and the walk begins at 11 a.m.
Anyone interested in walking can register at http://www.cff.org/great_strides/lovelylena
Any donations would be appreciated. Look for leapsforlena on CFF.org go to great strides and then Leaps for Lena.
Lena is 2 1/2. She was diagnosed when her mom, Lisa (McCarthy-Vibbert’s daughter), was 19 weeks pregnant.
“CF is a genetic disease. Lisa carries the CF gene DDF508 and so does her husband, John. Both of them being symptomless carriers,” McCarthy-Vibbert, said. “With every pregnancy there is a 1 in 4 chance of having a child with CF.”
Lena began treatments when she was just 2 weeks old.
She was prescribed enzymes and special vitamins to help digest and absorb food, her grandmother said.
The infant started manual chest percussions and nebulizer treatments at 4 months old, which were performed twice a day for up to two hours each day.
At 16 months, she began the vest (chest airway clearance machine).
“It cost $16,000 and thankfully John’s insurance did cover that cost,” McCarthy-Vibbert said.
She uses the vest 20 minutes, two times per day; Lena spends up to two hours with her parents daily doing treatments and vest.
“Since Lena was diagnosed, she has also been prescribed 10 different medications and supplements she uses each day. Just by looking at Lena you would never guess she has a chronic life-threatening disease,” McCarthy-Vibbert said. “Lena loves to sing, dance, play with her dollies and play her harmonica. She enjoys the outdoors and loves to run. Lena does not know that she has CF or what CF is.”
Lena was born October 2009; the first seven months for Lena’s parents and family “were filled with whys, how could this happen, what did we do wrong?”
“This time was was simply educating ourselves and our family,” McCarthy-Vibbert said. “In May 2010, we participated in the Great Strides Walk in Syracuse. Our team, Leaps for Lena, had more than 40 people participating and we raised as a team $2,500.”
“In January 2011, we were approached by the CNY Chapter of the Cystic Fibrosis Foundation to form a Great Strides Oswego Walk. Naturally we said YES! What better why to raise awareness than in our hometown?” she continued.
Since then they have helped raise funds and awareness about CF.
In April 2011 they held a Zumbathon at Mexico High School that raised $300. On May 21, 2011, at Breitbeck Park they held the first Great Strides Walk in Oswego; four teams registered and raised $9,000. Later that evening, they had the first Aiming for a Cure Dart Tournament at La Graf’s Pub in Oswego and raised $ 400 for Team Leaps for Lena.
In October 2011, they had Bowling Over CF at Lighthouse Lanes. Team Leaps for Lena raised $300. In December 2011 they held a Breakfast with Santa at the Masonic Temple (Lake City Lodge) and raised almost $1,000.
McCarthy-Vibbert’s husband, Paul, donated his time and Santa suit for the event.
This past Saturday (May 5), they held a Zumbathon.
As a team, Leaps for Lena, has raised close to $3,000 for the May 19 event.
“With the help of our hometown of Oswego, we hope to raise more at our walk,” McCarthy-Vibbert said. “For the event, we have a DJ and Syracuse radio personality Skip Clark, a karate demo, stretching by a Zumba instructor prior to the walk, Oswego Fire Department will provide a fire truck for the kids to see and ask questions about.”
Bottled water, pizza, bananas, cupcakes, yogurt will be available for walkers. Anyone who raises $100 or more will receive a Great Strides T-shirt.
“We are very dedicated to this cause. At times, I have been told this is an obsession,”
McCarthy-Vibbert said. “But, it is my granddaughter’s life I live for.”
On Lena’s 6 month birthday, her grandmother got a tattoo.
“I had always thought about a tat; but never really could decide on a cause, since it would be something I would have to live with forever,” she explained. “CF was my motivation. Lena, even with any drug they find for a cure will mostly likely always have CF. Tattoos are forever too.”
“I have one on my arm. It states the logo Sixty Five Roses. Google it and you will see the story of Sixty Five Roses – make sure you have a tissue ready,” she said.
She has a rose with a purple ribbon, which signifies awareness for CF. At each side of the ribbon she the letters CF and underneath it all she has “Lena.”
When there is a cure for CF she said on each side of the ribbon she’d have CF = cure found.
“Thank you for helping us make CF stand for cure found,” she said.
Someone sent her an email and indicated she obsesses about CF.
“Damn right I do. This is our life, Lena’s, life we fight the fight every day to help find a cure,” McCarthy-Vibbert replied. “Lena will survive. We pray every day and work every day to find a cure. We are striving to make CF stand for cure found!”