|Kimberly and Frank Jacobs Sr. of Huntersville were shocked when they suddenly lost their son Gabriel in 2015, when he was playing basketball in the backyard and died from sudden cardiac arrest. Their son was only 12 years old. They were unaware that he had an undetected heart defect.|
Their daughter Jayla, now 13, was hospitalized with pneumonia and doctors discovered that she had irreversible lung damage when she was five. She was also diagnosed with cystic fibrosis (CF). Then the Jacobs received another blow. Their son Ivan, then 17 years old, was diagnosed with CF and the heartache of having a child with a chronic illness returned.
Following Ivan’s diagnosis, Kimberly and Frank decided to have Jeremiah, now 16, and Frank Jr., now 24, tested. That’s when they discovered that Jeremiah also has the disease. Frank Jr. tested negative for the illness. The Jacobs will never know if their son Gabriel had CF.
The Jacobs learned that Ivan had CF after a series of emergency room visits following football games. They were initially told that his significant muscle spasms were caused by being severely dehydrated and salt depleted; however, after visits to a series of specialists, Ivan was tested for and diagnosed with CF. It was crushing news for the UNCC student who for years had seen his younger sister Jayla go in and out of the hospital for 10 days at a time.
The emotional toll it takes on parents when they discover their child has a serious illness can be crippling, but Kimberly said she has the same concern for her children that other parents have for theirs.
“As a parent, the ultimate challenge of raising children with CF is the same for raising children that don’t have it,” she said. “It’s never knowing when they will leave this earth. As a Christian, I’m comforted in knowing it has already been promised by Jesus Christ that we will live again eternally and reunite with Gabe.”
Kimberly recalls what a special child Gabriel was. “Gabe was not just a son and a brother, he was an anti-bullying mediator who sought to bring peace between people,” she said. “He wanted others to be happy. Gabe made everyone feel like they were his best friend.”
More than 30,000 children and adults in the U.S. are living with cystic fibrosis (CF), according to cystic-fibrosis.com. While it is one of the most common genetic disorders in white children, occurring in one of every 3,200 live births, one in every 17,000 African American children are born with the disease.
According to the Mayo Clinic, CF is an inherited disorder that causes severe
damage to the lungs, digestive system and other organs in the body. Cystic fibrosis causes the cells that produce secretions that are normally thin and slippery like mucus, sweat and digestive juices to become sticky and thick. Instead of acting as lubricants, the secretions clog up tubes, ducts and passageways, especially in the lungs and pancreas.
“Symptoms include chronic cough, frequent lung infections, poor growth and greasy stools. Cystic fibrosis affects the lungs, sinuses and gastrointestinal tract and can also affect the liver, bones, and genitourinary tract,” said Ashley Chadha, MD, one of the doctors at Atrium Health Levine Children’s Specialty Center (LCSC) treating the Jacobs children.
“Many advances, such as CF modulators, have added to the years and quality of life of people living with CF,” said Dr. Elizabeth Champion, who treats the Jacobs siblings at LCSC. Dr. Kenneth Coggins, an adult pulmonologist, now cares for Ivan. “In the 1950s, children born with CF were not expected to live past early
childhood, she said. “Today, people with CF grow up and attend college, pursue careers, get married and have children of their own. However, there is currently no cure for CF, and research is ongoing to realize this ultimate goal.”
A typical day for the Jacobs’ children involves a different schedule of care for each sibling from taking a variety of medications, vitamins and supplements “The road traveled by our patients with CF is a difficult one,” she said. The treatment regimen to prevent disease progression is very time consuming.
The clinic visits are long and consist of blood draws, throat swabs, X-rays and meeting multiple providers. Despite this, the Jacobs and their children are always patient, polite and appreciative. Their resilience and positive outlook on life is inspiring.”
The Jacobs have remained incredibly hopeful, positive and productive through all their health challenges. Kimberly hosts an online talk show, The Kim Jacobs Show on YouTube, and Frank Sr. is a senior pastor at The Rock Worship Center and Quest Church. Frank Jr. is a junior at the University of North Carolina at Chapel Hill. Ivan wants to be the first CF patient to play in the NFL. “He plays in honor of his brother Gabe,” Kimberly said.
“CF is a serious disease, but don’t treat us any differently,” said Ivan, who has managed to play college football, enjoys trying new healthy TikTok recipes and has a goal to inspire people through dedication and persistence.
Jeremiah studies theater and dance at Northwest School of the Arts and hopes to become a successful actor.
Jayla creates content on her own YouTube Channel, WonderBeast, and she’s currently writing a science fiction/ fantasy novel. She also wants to become a Christian missionary. The oldest Jacobs sibling Frank Jr., said having family members with CF has given him “more patience and understanding.”
“CF is a very significant thing, and their journey is very different than mine,” he said. “I’m more caring towards them and listen to their problems with an open mind,” he added. “I try to help them solve their issues in their own unique way. I go to the extreme to help them shine.”
Jeremiah adds, “I would like everyone to know that CF is a disease that affects a lot of people who don’t even know they have it, so I would like everyone to go get checked. The most challenging part of having CF is, honestly, what may happen to me in the future, but I know God and Gabe are watching over me, so I don’t sweat it.”
Kimberly believes that God doesn’t allow more than we can handle. “I believe that he has equipped me with everything I need for this journey,” she said. “He already knows the extreme seasons that I would experience as a mother, and I know that He has our best interest