When Julie Goodrow‘s first child was born in 2004, she never imagined that her life would be so different from other new mothers. Just one day after being born, the doctors told Julie that her daughter, Elena, now 11 years old, might suffer from a chronic and progressive disease, but it was only four months later that she was officially diagnosed with cystic fibrosis (CF). Now, mother and daughter share their story and daily struggles on the cystic fibrosis blog “Eyes on Elena: her CF Update” in order to help others.
Elena was born with meconium ileum, a kind of intestinal blockage, and during her first four months of life she had to undergo numerous surgeries while she fought complications, blockages, stomas and ostomy bags that almost killed her. She spent three months in the hospital and was seen by several different specialists until confirmation of the CF diagnosis.
“We had no prior knowledge that we would have a child with CF,” explained Julie in an exclusive interview with Cystic Fibrosis News Today. “She was our first child and we had not had prenatal genetic testing. When she was one day old, we were told she may have CF. It was not confirmed until genetic testing was completed. The results took six weeks to confirm that she did indeed have CF. We already knew she did at that point because of other health complications such as malabsorbtion.”
In the wake of the diagnosis, the family had to adapt to a new lifestyle — not only a life with a baby, but also living with CF. One of the main concerns was that Elena was too sick to attend school and would end up having to receive her education at home or in the hospital. So Julie decided to anticipate the problem: “I did not plan on being a homeschool parent. Once Elena was diagnosed, I thought about it for months. I did not research the possibility of it until she was two. At that point, I knew that is what we would do,” she said.
Julie started teaching her daughter at home, teaching Elena academics and exposing her to the arts through ballet and piano lessons. In the meantime, the family grew and Elena’s two younger school-age siblings are also home schooled in order to include them in the routine established at home. “It just made sense,” said Julie. The mother believes that there are several benefits to keeping the children home, as she can both reduce the risk of germ contamination and spend the day with her children “making learning fun.”
On the other hand, the daily routine has its struggles, since “it is not always easy, but it feels right at the end of each week.” Julie explained that the family is “by no means ordinary in our homeschool curriculum, but the openness for the kids to guide their learning has helped bring us all closer to a greater love of learning.” One of her challenges is to deal with her daughter’s discovery of the realities of the disease, with an estimated survival age of 37.4 years, according to the American Lung Association.
Despite the efforts of the family so that Elena can have a life similar to the ones of other children her age, the girl has several demanding schedules to manage her CF. Every day, Elena needs to take two or three breathing treatments depending on her congestion level, as well as chest physio therapy, nasal sprays, nebulizers to help her keep the airways clear and not swollen, and several pills, most of them to enable the absorption of the fat she ingests in food.
“I’m very fortunate to have been born in 2004 because there is research that has given us major life altering meds for CF,” stated Elena on her blog. “Kids born with CF 20-30 years ago were lucky to live to be my age. With new meds and awesome healthcare the life expectancy for people with CF is in the mid 30s!” Elena is in fact currently benefitting from these innovations, as she is starting new and more effective ways of managing the disease.
Last February, Elena started using the cutting-edge technology airway clearance vest for the treatment of respiratory diseases called AffloVest. Previously, she had used other percussion vests for her physiotherapy that were loud and tethered to a base unit. However, the new technology enables Elena to take her treatment quietly and while on the go, allowing her to stay active and mobile in her busy daily life.
“The AffloVest has made Elena’s cough more productive. She is finally able to cough up sputum,” said Julie about the new treatment. “You can hear the difference after her vest treatments. She is able to move mucus up and out. Previous treatment with her old vest never brought results like this. Her lungs sound more clear. We are anxious to see if her lung functions has gone up by her next clinic visit! Our guess is, yes!”
The AffloVest has also turned out to be a more affordable option for the family as well. With Elena’s previous vest, the family had high monthly payments for a year in order to pay the costs that insurance did not cover. However, remaining costs for the AffloVest, which is produced and commercialized by Austin-based International Biophysics Corporation, will be paid over the course of five years in order to reduce the financial burden.
In addition to providing homeschooling to her three children, helping Elena deal with CF and running the blog about the family’s life, Julie has also become focused on raising awareness about CF and funds to find a cure for the disease. She is currently on the board of the organization Miles for Cystic Fibrosis, which was created in 2007 and gathers supporters in runs, who wear the bright blue team shirts of the organization.
Elena has also initiated a child’s version of the Miles for CF team when she was only five years old, called Rosebuds, which is a group of children younger than 14 years old that run in two races annually and already helped raise over $45,000 for CF charities. Elena has also been invited to speak at several events about the disease and she makes awareness videos “that are sometimes serious, but many times are silly parodies to help put a smile on someone’s face while also teaching them about CF,” according to Julie.
For more information and to follow Elena’s day to day battle against cystic fibrosis, be sure to visit and subscribe to Eyes on Elena: her CF Update.