All Heart: Jillian’s Legacy proves strong with walk, car show in Parkersburg
PARKERSBURG — One in one-hundred. Out of all of the babies born each day, one out of every hundred will statistically be born with a congenital heart disease of some form. CHD is a broad term, used to describe any number of heart defects that will impact each child differently. Some children may grow to lead relatively unaffected lives, while some may need to take life at their own pace. Some may need many surgeries and transplants, and some are not valid candidates or will not make it to receive their gift of life.
It is a hard truth, and one many parents face following the birth of their new babies.
On Sunday, Jillian’s Legacy sponsored a heart walk and car show at Parkersburg City Park to raise awareness of CHD, the need for organ donors and funds for their nonprofit, which focuses on brightening the lives of siblings of terminally ill children and helping them better understand and prepare for the loss of their sibling.
“We want to make sure they’re feeling loved and supported as well,” said Deanna Harlow, Jillian’s mother. “They are the unseen superheroes.”
Jillian Harlow of Vincent, whom the nonprofit is named after, had three siblings whom she loved and who loved her back.
She was born on May 10, 2017, with Hypoplastic Left Heart Syndrome. At five days old, she had a hybrid heart surgery, which uses a catherization technique rather than full invasive surgery. A few weeks later, she had a heart catherization to blow a hole in her atrial septum. After several months in the hospital, she had open heart surgery on Oct. 11, 2017. Later that year, she would be diagnosed with Hydrocephalous, and would require a surgical procedure to remove fluid off her brain. In February 2018, she would receive the news that she developed two pulmonary diseases that would cause her left lung to stop functioning. She also got the news her Inferior Vena Cava was narrowing This would require countless heart catheterizations every few months for the rest of her life. On July 17, 2019, she was admitted to the CTICU in diastolic heart failure. After going through the heart transplant testing, it was determined she would not be a candidate for a transplant.
After more than a month in the hospital, she would be released home under one circumstance; she would have to have hospice nursing. Thanks to the wonderful care from her hospice nurse and the cardiology team at Nationwide Children’s, her family would get an additional year and a half with her before she passed away on March 27, 2021.
Her story was just one out of the many Mid-Ohio Valley children effected by CHD.
The walk itself highlighted many area “Heart Warriors.”
Those that are still fighting are: Chase Hartman; Doc Cecil; Pryce Rollyson; Eli Miller; Lincoln Rykowski; Baylor Kupfner; Kaylianna Reno; Grayson Holdstock; Allen Shoenlein; Kristen Huffman; Ashlyn Michelle Clark; Izabelle Beck; McKenna Langley; Decker Nolan; Amara Nalley; Kyler Tullius; Breanna Tullius; Palmer Hescht; Brantley Cherup; Magnolia Corbin; Ethan Miner-Park; and Willow Remy.
Those that are remembered were: Jillian Harlow; Axel Huck; Easton Holden; Kinslee Hall; and Mya Henschen.
Each child’s story was posted on a sign lining the walk starting area, and they were read aloud in intervals during the event.
Before walking in honor of area “Heart Warriors”, visitors were able to enjoy a car show, vendors, silent auction, a raffle and food.
One of the many vehicles at the car show was a 67 Rally Sport Camaro, brought out by Ron Bauerbach.
Bauerbach said he hasn’t been out to a car show in years, but he wanted to get out and raise awareness for CHD.
“My grandson Axel Huck passed away right after his first birthday,” said Bauerbach.
Huck was born on March 26, 2019, at Marietta Memorial Hospital. The family was told he had a heart murmur at birth and to follow up with a cardiologist. Just nine short days after being born, he started to go into respiratory failure and was taken to Marietta Memorial ER where they got him intubated and stable enough to life flight him to Nationwide Children’s Hospital. Upon his arrival to Nationwide Children’s ER, it was discovered that the “heart murmur” was much more. He had a cardiac aortic arch blockage, multiple heart murmurs, mitral valve stenosis and his organs had started shutting down. On top of his multiple heart defects, his kidneys would be a medical issue as they were severely damaged when his body started to shut down on day nine. Nationwide Children’s CTICY is where the family would get to spend his life with him. Axel went through 3 heart surgeries, gtube surgeries, dialysis, little procedures, daily blood work and imaging.
“He was truly a little warrior, fighting when his body was telling us he was just too sick to go on,” Bauerbach said.
Axel was able to come home a few times to spend time with his older brother Slade, but due to medical hospital needs, would end back up at Nationwide by squad or life flight. Axel spent his one year of life wrecking havoc in the CTICU where he stole the hearts of multiple nurses, doctors and therapy specialists. As Axel got sicker and options were limited, the family found out he wasn’t a candidate for a heart transplant. He was not a candidate for the transplant because he also needed a kidney transplant at the same time which was unheard of in a kid his age. The family then made the toughest decision a parent should ever have to make and decided they would do everything they could to get him to his first birthday and that is what they did. Huck lost his CHD battle two days after he turned one.
Although some were hospitalized or due to health concerns were unable to make it, there were a handful of the “Heart Warriors” at the event.
Among them was Chase Hartman, who was running around with other kids in his group showing off his muscles so that everyone could see just how strong he is.
Hartman was born with Hypoplastic Left Heart Syndrome. He is five years old. He has had three open heart surgeries to date, and multiple other procedures and tests. He has spent around 100 days in the hospital. He was diagnosed with protein losing enteropathy last year. He currently takes nine medications daily and takes at-home infusions once per week. As the surgeries and procedures will never be a cure for Chase, a heart will transplant will be sometime in his future. Despite all the challenges he has faced, he is a typical, happy little boy who loves being outside riding his bike, painting, and cooking. He loves spending times with his older brother, Logan, and he enjoys going to preschool.
“We are so grateful for our sponsors, vendors and car drivers who came out today to help us make a difference,” said Deanna Harlow.
Madeline Scarborough can be reached at email@example.com