J. is a bright, friendly, funny three-year-old with a laugh that’s contagious and a smile that can light up a room. He loves music, talking, joking, and horsing around with his friends and family, making new friends, playing and moving as much and in as many ways as he can. J. lives with Mom (Rachel), Dad (Alex), newborn baby sister (“Sparkle”), and Archie, the family’s 55-pound lap dog. J. was born in Chicago, Illinois, in the early days of the COVID-19 pandemic and eight weeks before his due date. While his early arrival was completely unexpected in what had otherwise been a normal and healthy pregnancy, J. was beautiful and big for his age, weighing in at five pounds and one ounce. He spent his first month of life in the NICU, which was a very difficult time for our family. But J. grew well, and while his NICU care team and pediatrician told us to expect some delays in his development, saying things like, “32-weekers are different,” and “he’ll do things in his own time,” everyone assured us that with some extra help from therapies, he would do just fine and would likely catch up to his peers by age two.

 

By the time J. was about six months old, we started having some trouble getting him down to sleep: when laid into his crib, after a second or two both arms and legs would move up at the same time, and he would startle himself awake. We described the movements to one of J.’s physical therapists, who was able to observe them during a Zoom session one afternoon shortly after J. woke from a nap. She encouraged us to contact our pediatrician right away. What followed was an outpatient EEG and then an eleven-day hospital stay, where things went from bad to worse. J. was suffering from infantile spasms (a rare and devastating seizure type that damages the brain with each occurrence). An MRI revealed that his brain had been severely damaged, with evidence of severe Periventricular Leukomalacia (damage to the white matter on both sides of the ventricles in his brain), and diffuse intraventricular hemorrhage, most likely the result of an event or period of oxygen deprivation at or around the time of birth. The specifics, however — exactly when, why and how his injuries occurred — are still unclear. By summer 2021, J. had received additional diagnoses of optic atrophy, Cortical Visual Impairment (CVI) and quadriplegic cerebral palsy, among others. In late January 2022, our family came down with COVID, and J. suffered his first grand mal seizures in a prolonged period of status epilepticus (seizures that do not stop). After he recovered from the grand mal seizures and the multiple rounds of rescue medications required to stop them, his infantile spasms relapsed. Thankfully, J. made a strong recovery, and with the help of our fantastic team of specialists and therapists, and a lot of hard work on J.’s part, he continues to grow and learn every day.

 

Despite everything he has been through and all the challenges life has thrown his way in just three years, J. continues to prove himself to be a tenacious, adaptable, and hardworking kid. He has a deep joy for life that you can hear in his big laugh (which can range from a big belly laugh to a crinkle-nosed cackle) and see in his eyes when he’s enjoying the things he loves, which are many: music, stories, and rhymes (anything with a good rhythm), swinging, swimming, UTV rides, and so much more. But J.’s very favorite things to do are walk and run in his gait trainer and play in a harness system, which supports his body weight and allows him to spin, stomp, crawl and bounce around wherever his size-8 preschooler feet will take him. When J. is on the move, he becomes the J.-MONSTER, joy and terror of anyone and anything in his vicinity! J. is open to the world: to new people, experiences, and things in a way that is really exceptional. He shows an empathy, kindness, and gentleness to others that we think comes from experiencing things few others ever will. He is a friend to everyone he meets, a gift to our family, and an important part of our community and world. Like each and every Wish Kid, J. is making an impact in ways that we can see now — and will continue to make an impact in ways that we can only look forward to discovering in the future.