Support the Kowalski Jones Family

It's impossible to wrap our heads around the mantle of stress Kari and James have carried on their shoulders since their oldest son Sullivan was first diagnosed with brain cancer 10 (!!!) years ago. We receive each new CaringBridge update with gratitude, even as we hold our breath waiting for news of reassuring scan results. Because the world is full of magic and grace, Sullivan is getting ready to wrap up 9th grade. He's an excellent bowler; he's recently moved from public to private school where, for the first time, he's found an educational environment that complements his learning differences; he was the stage manager in the school musical. Sullivan's next MRI is scheduled for May 24th. Keep everything crossed for clear scans. In the meantime, the family is prepping for a costly jaw surgery for Sullivan that they've been fighting unsuccessfully with their insurance to cover. 

There was so much good news to celebrate in Kari's last CaringBridge. But, despite her ever-upbeat delivery, there was also the reality of new stresses and financial burdens. Kari and James are the lucky, grateful parents of three awesome children–each of them navigating the world with complicated diagnoses. Lovely 7th grader Hawthorne was just diagnosed with autism, lives with the rare genetic disorder CLOVES syndrome, and has to get scoliosis surgery this summer. She also found enormous solace riding horses this year and has fallen in love with barn life. Go Hawthorne! Thatcher lives with ADHD and issues of impulsivity. He needs specialized attention to help him thrive, so that he can get back to 4th grade fun playing volleyball and baseball and devouring anime.

And dear Sullivan, who's about spent his whole life beating the odds, is scheduled to undergo a costly jaw surgery in July that's been four years in the making. The procedure will pull forward his upper jaw, lower jaw, and chin. Any nerves of your child being operated on are compounded when their medical history is as complicated as Sullivan's. The radiation he received as part of his cancer treatment could effect his healing process and he'll need hyperbaric oxygen therapy while he's under to bolster his blood circulation. Kari and James are staring down at least $20, 000 of out-of-pocket expenses on the surgery alone.

The specialty schools; the many therapists; Hawthorne's transformative riding lessons; her out-of-pocket scoliosis brace; the out-of-pocket brace needed to help correct Sullivan's pigeon breastbone; the many MRIs and potential surgeries looming ahead. It's all too much for one family to bear alone.

In a perfect world, this fundraiser would be unnecessary. Or it would go only to pay for weekly massages for these brave and resilient parents, for a bowling alley in the basement for Sullivan and a horse for Hawthorne and a sand volleyball pit in the backyard for Thatcher. But in this world, let's help cover the cost of Sullivan's jaw surgery and take one giant burden off of this amazing family.