No health setbacks are going to stop James DeLano from greeting every day with optimism and a desire to serve his community.

 

 

Ask anyone who knows 14-year-old James DeLano to describe him, and that person is bound to talk about his positivity. “James’s loving smile and warm hugs are the outward signs of his strength of character and goodness of his heart,” reads his biographical excerpt from The Oley Foundation’s national conference program this summer, where James was named the foundation’s Child of the Year. These words alone count as high praise, but considering the health limitations this Hoover teenager faces on a daily basis, they seem only to scratch the surface of who he is and how deeply he cares for others.



James was diagnosed with severe Eosinophilic Esophagitis, a chronic inflammatory disease of the esophagus, when he was 4 years old, and got a feeding tube the next year. When he was 6, James was diagnosed with a long-term disorder called mitochondrial disease, or mito, which occurs when a person’s mitochondria don’t produce enough energy for his body to function properly. “When James was diagnosed with EoE, we were relieved because we just wanted answers to why he was throwing up on a daily basis,” Victoria DeLano, James’s mom, says. “When he was diagnosed with mitochondrial disease, we were not surprised because his doctors in Cincinnati (at the time), Atlanta and the Carolinas had prepared us.”

James compared living with mitochondrial disease to running a household on an AA battery. “I have to be cognizant of how I manage my energy throughout each day,” James says. “If I overdo anything, I not only pay with exhaustion that can last for weeks, but I also have had significant impact on my organs in the past.” Four years ago, James had intestinal failure, liver disease, signs of bone marrow failure and significant problems with his heart rate and blood pressure. He had to be on IV therapy for 23 hours a day and relied on his wheelchair almost all of the time. Now, he stays on a strict regimen to prevent problems, starting with a round of medications when he wakes up and another round before bed. “I am fed through a feeding tube through the night to help provide enough of what my body needs and to avoid fasting,” he says. “All of my activities are well planned in advance because I have to be very careful with my energy expenditures.”

As if the first two diagnoses weren’t challenging enough, James and his family grappled with yet another major setback three years ago, when he was diagnosed with Hemophagocytic Lymphohistiocystosis, a “cancer-like disease,” as James describes it, that came on suddenly and caused him to go into multi-organ failure with fevers over 108 degrees within three days of the onset of his symptoms. “The day after I was diagnosed with HLH, I was put on a ventilator and was in a coma,” James says. “It took months for me to recover, and my doctors still watch my labs closely for a reactivation of the HLH.”

Victoria echoes James’s summation, describing the news of this latest diagnosis as shocking. “We had seen his health decline over the previous year, and James’s pediatrician had already counseled us to take a final trip together as a family,” she says. “We all assumed it was the normal progression of mitochondrial disease. His hematologist was preparing us for the worst, and with his history of liver involvement from his mitochondrial disease, we were not surprised as his labs worsened.” They were, however, shocked when they were told he had HLH, as two families they had befriended in the rare disease community had just lost their sons of similar age to HLH after long progressions of their other diseases. “We knew exactly what the prognosis of HLH looked like and felt at peace that no matter what the outcome, it was all in God’s plan.”

But true to form, James rebounded from the setback, and eventually went back to doing his school work and community service. “I am amazed and overwhelmed with pride every single day,” his mother says. “Many of the things James has gone through have been heartbreaking.”

Heartbreaking might not be a strong enough word for it, though. “My husband and I have been given the choice to stop care and let him go,” she continues. “We have held him as he bled out and a medical team worked on him for hours to stop the bleeding. We have watched as most of his friends left his side because he was so sick. We have fought for him to have access to public places when using his wheelchair or with his service dog. We have fought for him to have access to a public education. We have fought for him to have access to good healthcare and services, something that is tremendously difficult for those living with rare and complex diseases.”

Despite everything, James maintains hope, joy, strength, courage and gratitude—and offers these priceless gifts to his family and others he crosses paths with each day. “We are most proud of his faith in God and peace with the life that he has been given,” Victoria says. “He once told us that he would not change a thing because this is the plan that God has for him. James has taught us how to live a better life.”

Being homeschooled allows James to better manage his energy and keep his overall health more stable. He is in the ninth grade in Evangel Christian School’s homeschool program. He is involved in the ECS Key Club and High School Choir, as well as the Contenders Debate and Speech Team. “I am able to progress much more quickly in my studies and enjoy the academic challenge,” he says. “Having the opportunity to complete my academics at home allows me to focus my time away from home on activities I enjoy.”

He rides and volunteers with Special Equestrians, volunteers at the Hoover Public Library, is an active member of the Shades Mountain Community Church high school youth group, swims and exercises at the Hoover YMCA, reads, does woodcarving, plays video games and spends ample amounts of time with his service dog, Lennie. All of this is possible because of nutrition therapy. “I have had a G or GJ feeding tube for nine years and had a central line for four years,” James says. “While I am now eating, my diet is extremely limited and requires me to eat and drink often. I am still on a feeding pump through the night to get what my body requires, and we work closely with my dietitian to help with my restricted diet.”

During the past nine years, James has gone through periods of not being able to eat or drink anything by mouth, which made it difficult for him to attend school consistently, swim or even shower. “The most challenging obstacle for me was the lack of wider understanding about rare diseases and how they not only impact day to day life, but also forced me to face the idea of my own mortality,” he says.

Victoria says their family is extremely thankful for the equipment – the feeding tube and central line – that have helped James be as strong as possible and do the things that enrich his life. “James is a perfect example of someone who is thriving thanks to that piece of plastic,” she says. “My husband and I are both involved in his nutrition therapy. His care takes up a tremendous amount of time, especially since we have to travel as far as Maryland and Ohio to see the experts in his diagnoses. Jim and I hope for James’s health to stay stable, obviously, and for him to have joy in each day.”

James credits his family, friends and four-legged sidekick, Lennie, with helping him stay motivated, positive and active. “I like giving back to the community because of what so many people have done for me,” he says. His volunteer service includes annual donation drives for the Ronald McDonald House of the Carolinas (his family’s home away from home), helping his family raise service dog puppies in training for Canine Companions for Independence, organizing blood drives in his community and speaking in public to share his story. In addition to receiving The Oley Foundation’s Child of the Year award this summer, James was nominated for the Innovator/Advocator and Celebration of Life awards.

He says he is currently working to complete the Congressional Award, and accomplishing his goals in the areas of volunteer community service, physical fitness, personal development and an exploration trip. He plans to become a librarian when he is finished with school. After experiences that would test the perseverance of even the strongest adult, James is not just living, but thriving. “He inspires me most in his faith and his ability to live in the moment,” Victoria says. “He does not look at the past and does not fear the future. James takes life one day at a time, living it to the fullest. He surrounds himself with those who lift him up and serves when he sees a need.”