South Slope Preschooler Shows Cystic Fibrosis Who’s Boss
From the moment Lucy Farrow walks into a room, you have no choice but to fall in love. The brunette beauty has one of those infectious giggles that will bring a smile to your face on even the darkest of days, and although quiet and ladylike at times, there is definitely spunk in those twinkling brown eyes.
Like most little girls, the South Slope three-year-old loves dolls, Candyland, art, riding her scooter, and jumping on her trampoline. Unlike her preschool counterparts, though, Lucy faces significant health challenges that cast a shadow over an otherwise bright future.
Lucy has cystic fibrosis.
“Cystic Fibrosis (CF) is a chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide),” Lucy’s mom, Amy, recently explained to us. “A defective gene and its protein product cause the body to produce unusually thick, sticky mucus.
“This mucus clogs the lungs,” she said, “leading to life-threatening lung infections, obstructs the pancreas, and stops natural enzymes from helping the body break down and absorb food.”
In order for a child to be born with CF, they must receive one defective gene, the CF carrier gene, from each parent.
“If one person is a carrier,” said Amy, “there is no risk of having a child with CF. However, if both parents are carriers, you have a 1 in 4 chance of having a child with CF. I believe it was about 30-32 weeks when we found out we were both carriers.”
Because Amy was in the later stages of her pregnancy, the risks of an amniocentesis, which can be used to diagnosis genetic conditions such as CF in utero, were too high, so she and her husband, Nick, waited until after Lucy’s birth to run tests on the baby.
“The genetics counselors advised us to have cord blood taken at delivery so we could get results as fast as possible,” said Amy. “About 10 days after Lucy was born, we got a call saying she was a carrier. We were so relieved.”
Unfortunately, the relief from hearing their daughter did not have CF was short-lived.
“Lucy was not gaining weight (5 days in she had dropped from 5-8 to 4-14, which was SO scary) and breastfeeding continued to be a challenge,” Amy said. “I saw lactation consultants and spent a lot of skin to skin time, and pumped as much as possible but we also supplemented with formula.
“A week later,” she continued, “we got a call from newborn screening stating that Lucy was identified as having CF. We were shocked, but long story short, there was a lab error in the first test (they had tested my blood, not Lucy’s). At least now we knew, and we met with the pediatric pulmonary doctor, and the first thing they did was put her on pancreatic enzymes to help her absorb nutrients from food (she was losing most of her nutrients through her stools).”
Although CF is a genetic disorder, Amy said they had been unaware of any family history of the disease.
“We had no idea,” said Amy. “Subsequent to Lucy’s birth, I’ve identified another family member on my father’s side who has CF, so we presume it came from that side of our family. All of my aunts and cousins have been made aware.”
Luckily, Lucy has not had many complications over the past three years, and continues to thrive. Keeping that balance requires a steady regime of medications and therapies, though, all of which have become second nature to the resilient preschooler.
“Lucy handles it all like a champ,” Amy told us. “There’s medicine that she’s taken since the very early days (3 weeks) and a hypertonic saline and physical therapy (a vest) that she’s done since 6 months of age. She watches TV during the treatment and so we just make sure she’s got something new to engage her so it doesn’t seem too bad. She fights it sometimes but this is typically when she’s tired.”
There is no cure for CF, and while significant advances have been made in extending the lives of those living with the disease, the median life expectancy is only 37.
“The goal is to keep her healthy (high fat diet, exercise to force lung clearance, daily treatments), to prevent build up of mucus in her lungs,” said Amy. “Other than these things, they really don’t understand what causes some children to have worse clogging of mucus than others, so there is no real way to predict if you have a child with a severe or a mild case, especially with the most common strain (delta f508).
“Should her lungs reduce capacity sufficiently,” she continued, “one option is a lung transplant. This is a difficult procedure, but has worked for some patients. When it does work, CF is basically gone from the lungs.”
Despite all of this, Amy and Nick have done a fabulous job at making sure Lucy leads as happy and as normal of a life as possible.
“She goes to preschool 3 days a week, said Amy, “and loves her teachers and all of her friends at school. Like most children, attending school has been wonderful for her in bringing out her confidence and communication skills.
“Many parents of CF children decide not to send their children to preschool,” she continued, “with the assumption that it’s likely the child will get more sick if they are in a child care or preschool setting. While this is true and we do not want to put Lucy’s life in danger, we also do not want her to live a limited, isolated life. She’s been in school for nearly 9 months and while she’s had a few more sniffles and coughs, she has been very healthy.
“It was a big concern of ours,” she added, “but we are so happy with our decision.”
As the weather warms, and we continue our trek toward summer, Amy, Nick and Lucy are preparing for their fourth Great Strides Cystic Fibrosis walk, scheduled to take place in Manhattan on June 2.
“Through the Great Strides walks we’ve raised over 30K and expect to hit at least 35K with additional efforts this year,” said Amy. “Outside of Great Strides, we have also raised > 50,000 through annual donations and gala events.”
“From our perspective,” she said, “we do everything we can to raise money as we need a cure for this disease! We won’t stop until we get one.
With four teams participating in Great Strides walks across the country, Team Farrow has set their sights high for 2013.
“We have a big goal this year – 25K across our national team,” Amy told us. “We’re currently just under 5K but are doing everything we can to hit that goal!”
This is where you come in, South Slope. Here’s how we can help Team Farrow make this the best walk yet.
“We need walkers,” said Amy. “Come show your support, get a few folks to donate to your walk effort. Every dollar counts. Start small – raise $100? Create a team and get 4-5 other people to do the same! That’s how this works. The walk course is beautiful, the weather should be lovely, why not get a bunch of friends or colleagues out to enjoy it and be proud of doing something GREAT!”
“We really want to hit our 25K goal,” she added. “Any amount you can donate is greatly appreciated, or if you are a local business that wants to sponsor a fundraising event with us or donate some % of proceeds, we would LOVE it!”
It hasn’t been an easy road, but Amy and Nick haven’t let Lucy’s diagnosis get them down.
“It has made us not sweat the small stuff and focus really on what’s important in life,” Amy said. “We don’t remember this every day or every moment, but we do keep this in perspective WAY more than we used to. There are no guarantees in life, as we all know, so we just try to live every day in the moment, and to its fullest!”
For more information on the upcoming Great Strides walk, visit Team Farrow’s fundraising page,. Interested in sponsoring a fundraising event? Email Amy directly at firstname.lastname@example.org.
Photo via Amy Farrow
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