Will was first diagnosed with Febrile Infection-Related Epilepsy Syndrome (FIRES) in July 2016 at the age of nine. FIRES is a rare and severe epilepsy syndrome that affects only one in a million children.
“[The morning of] July 23rd started like a typical Saturday with Will in good spirits and asking to go to the mall for some new shoes,” Will’s mother, Jessica, remembers. “During our visit to the mall, Will became confused and agitated, and by the time we were on our way home, something was wrong. We took him to the closest hospital where his condition worsened, and he wasn’t able to speak.”
While at the hospital, Will was given an MRI and other tests, but his doctors did not find anything out of the ordinary. He was then transported to University of Iowa Hospitals and Clinics (UIHC) and he continued to decline. It was at UIHC that they learned that Will was having seizures and would be admitted to the Pediatric Intensive Care Unit. Over the next several weeks, Will’s condition continued to deteriorate as he was experiencing near-constant seizure activity. After many treatments, including a medically induced coma, Intravenous Immunoglobulin (IVIG) treatments and a switch to a medical ketogenic diet, Will’s condition finally began to improve.
As Will’s condition improved, his family saw that he wasn’t the same Will. Following his new diagnosis, Will had to undergo several weeks of therapy and rehabilitation where he would relearn how to walk and talk. While in therapy and rehabilitation, Will made tremendous improvements, and has since been able to return to school and participate in some of his old activities before his diagnosis.
Though he has chronic epilepsy and continues to have seizures, our goal for him has always been to have a normal childhood to the best possible extent.
Will’s mother, Jessica, shares that “though he has chronic epilepsy and continues to have seizures, our goal for him has always been to have a normal childhood to the best possible extent. This has not been easy for him and some days are better than others, but he handles everything with such courage and strength. Will’s spirit inspires us every day; we always say, ‘Wades don’t quit!’”
Will’s family first learned of his wish eligibility during his time at UIHC in 2016. Will’s parents, Ryan and Jessica, were thrilled when they received the good news from his care team just before Christmas. On Christmas Day, Will was given the gift of a lifetime when his parents shared with him that his wish would be granted. The next step would be to meet with wish granters to decide what that wish would be. During his meetings with the wish granters, Will shared that he loved antique cars, oil and gas memorabilia, and had watched the Barrett Jackson auction with his dad for years. After meeting with his Make-A-Wish® Iowa volunteers several times and juggling different options, Will decided he would like to attend the Barrett Jackson auction in Scottsdale, Arizona.
The Iowa and Arizona Make-A-Wish chapters worked together to create an unforgettable experience for Will. “While there, he was able to see so many cars and meet so many incredible people,” Jessica reflects. “Not only did we attend Barrett-Jackson, but he also got to help auction off a Jeep CJ7 for Make-A-Wish Arizona. The Jeep even sold three times for a total of $425,000! We went for a joy ride with a professional driver in a Ford GT 40 and a Ford Mustang and had so much fun! We also saw amazing car collections, visited the Penske museum, and Will had the opportunity to meet some very influential people from the car world – some of them have their own TV shows. He was totally starstruck!”
During his wish experience, Will became a local celebrity and created amazing memories that will last a lifetime. Will and his family share that his wish experience created a powerful impact on his medical journey; he was given hope, joy and a chance to focus on having fun and just being himself.
Will’s family believes in the power of Make-A-Wish to uplift children who are battling a critical illness. Throughout his medical journey, Will has had many ups and downs, but his wish experience brought him pure happiness and left a positive and life-changing impact.
It allowed our family to step out of the day-to-day and just spend time together and enjoy one another. Everyone treated our family with such kindness.
“It allowed our family to step out of the day-to-day and just spend time together and enjoy one another. Everyone treated our family with such kindness,” Jessica says. “There were so many great moments and memories made – our hearts will be forever full. Kids are strong and resilient, and Make-A-Wish helps give kids with critical illnesses renewed strength, joy and the memories they deserve”
Will’s experience allowed him to feel like himself again and create wonderful memories that will last a lifetime. By supporting Make-A-Wish, you can help children battling critical illnesses create more moments and memories of happiness.