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‘Creek Strong’: Community rallies behind 5-month-old boy following challenging medical journey

 CASSADAGA – At just five months old, Creek Case has faced more medical challenges than most people would experience throughout their lifetime.

After spending nearly his entire life in the hospital undergoing multiple surgeries and learning to breathe with the help of a ventilator, the young boy is now home with his family as he continues his recovery.

Now, family, friends and members of the surrounding community are coming together to support Creek's parents, Micheala Kubera and Ryan Case, and sister Calie Case, through a benefit being held in his honor.

A benefit for Creek Case and his family will be held Saturday, Nov. 21, from 1 to 7 p.m. at the Falconer Moose Lodge. Those interested in ticket and donation information for the event can be found at the Case family website, or on Facebook at 'Case family benefit' event page.

LONG JOURNEY

For Creek's parents, the past five months have been filled with uncertainty, as many difficult decisions and countless hospital visits have come about. Through all of it though, they say their little guy Creek has continued to show strength.

Creek’s medical journey began before he was even born. His mother said the family learned he had heart defects when she was about 16 weeks pregnant.

At the time, doctors explained that he would either need heart surgery immediately after birth or could potentially wait, depending on his condition.

“Creek did have surgery one day after birth,” his mother said.

Following his birth, Creek faced several additional complications. He experienced a bowel obstruction that required doctors to place a colostomy bag, along with a feeding tube, commonly known as a G-tube.

About a month later, while still in the neonatal intensive care unit, Creek underwent surgery to repair a tracheoesophageal fistula (TEF), a condition involving an abnormal connection between the esophagus and trachea.

His mother explained that his esophagus and trachea had not separated properly, leaving him unable to eat by mouth or swallow his own saliva.

It was not until roughly a week after his birth that the family learned Creek had VACTERL syndrome, a rare association of birth defects that can affect multiple parts of the body.

The diagnosis came as a shock, but his parents knew they would face the challenges together.

“We were shocked, but knew our little boy was a fighter and we were gonna fight with him,” his mom said.

Creek’s medical complications continued in the months that followed. His family said they were warned that complications could arise with the various surgeries and procedures he would need.

“We have watched our baby turn blue and destat more times than anyone should,” his mother said.

FINALLY HOME

After spending months in the hospital, the family finally got to bring Creek home. However, that first stay at home lasted just six days.

His parents said Creek experienced a spell in which his breathing slowed, prompting the family to seek immediate medical attention. UPMC Chautauqua transferred him to Strong Memorial Hospital in Rochester, over two hours away from home, where doctors performed an echocardiogram so it could be determined whether he would need another heart surgery the following morning.

Creek was then diagnosed with pulmonary stenosis, a condition involving a narrowing that restricts blood flow from the heart to the lungs.

During the procedure to address this, doctors removed tissue that was blocking his pulmonary artery. Although the surgery helped address that issue, Creek still has a large hole in his heart and will require another heart surgery in the future.

For now, his parents say that he is stable.

Following the heart surgery, Creek experienced additional breathing difficulties. Doctors discovered narrowing in his left lung, which ultimately led to him receiving a tracheostomy, or trach, to help manage his breathing.

He now relies on a ventilator to assist him.

SIGNIFICANT ADJUSTMENTS

The medical challenges have also required significant adjustments for the entire family. With Creek needing ongoing care, his mother said the family transitioned to a single-income household so she could remain by his side and learn how to properly care for him.

“With that we became a one income household so I could continue to stay beside and learn how to properly care for our baby,” she said.

His parents have had to learn how to manage his tracheostomy and ventilator while preparing for the medical needs that come with caring for him at home.

“Having Creek spend almost his entire life in the hospital has been one of the hardest things our family has ever gone through,” his dad said. “As parents, you imagine bringing your baby home, watching him grow, and experiencing all those first moments together. Instead, so much of Creek’s life has been spent in a hospital room, surrounded by monitors, machines, procedures, and medical staff.”

The experience has taken an emotional, physical and financial toll on the family, with countless trips back and forth to the hospital, missed time at home and additional expenses associated with Creek’s treatment.

His mother said one of the most difficult aspects has been trying to balance Creek’s medical needs with the responsibilities of everyday life.

“The hardest part has been trying to be there for everyone while making sure Creek gets the care and attention he needs,” she said. “There are times when it feels like we have to choose where we need to be, and that’s never easy.”

With the family now adjusting to life at home, the next several months will involve establishing routines around Creek’s care, including nursing assistance, medical appointments and monitoring his health and progress.

Despite the uncertainty ahead, being able to care for him at home is something the family has been looking forward to.

“More than anything, we are looking forward to making memories as a family, watching Creek grow, and getting to experience some of those little everyday moments we have missed out on over the past five months,” Case said.

'ESPECIALLY MEANINGFUL'

As the family continues navigating these challenges, the benefit has provided an opportunity for the community to show its support.

His mother said the event came together through the generosity of family, friends and community members who wanted to find a way to help.

The response has included donations of baskets, gift cards, raffle items and food, along with volunteers contributing their time to make the event possible.

“We are not people who are used to asking for help, but we have learned that sometimes it takes a village,” she said.

The money raised will help offset the families expenses associated with Creek’s extended hospital stays, including gas, travel, missed work and the financial strain of relying on one income. The family also faces additional expenses as they continue managing his heart condition and the equipment needed for his breathing.

“This benefit will help take some of that financial pressure off our family so we can focus on what matters most: Creek and his continued progress,” his mother explained.

She added that the support has extended beyond people the family knows personally, with others donating, volunteering, sharing Creek’s story and contributing in any way they can.

"Having the Cassadaga and surrounding communities rally behind their family has been especially meaningful," she said. “Knowing that so many people care about our little boy and want to help him through this journey reminds us that we aren’t alone."

While Creek’s medical journey is far from over, his parents and sister remain hopeful about what lies ahead. Their biggest wish is for him to have the opportunity to experience the childhood that so many families take for granted.

“Our biggest hope for Creek is that he gets the chance to just be a little boy,” his father said. “After everything he has been through in his short life, we want nothing more than to see him healthy, happy, and able to experience all the things other children get to enjoy.”

The family also wants people to see Creek for more than his medical conditions and the equipment that helps keep him going.

“He’s our happy, sweet little boy, and we want him to have the opportunity to grow up, make memories, explore the world, and just be a kid,” his mother said.

Although he is still facing challenges, his parents say he will never have to face them alone.

“Creek Strong isn’t just a saying; it’s who he is,” she continued.

The family expressed its gratitude to everyone who has supported them, saying the kindness and generosity shown throughout Creek’s journey is something they will never forget.

“No amount of words can truly express how grateful we are,” Kubera exclaimed. “Creek is one lucky little boy to have so many people in his corner, and we hope one day we can show him just how much love has surrounded him from the very beginning.”