$91,227.44

JULIAN'S STORY

Julian was diagnosed with DIPG on November 11, 2023, after exhibiting symptoms including fatigue, loss of balance, and partial facial paralysis. He died on August 12, 2025, aged 7 years and 30 days.

Julian was gentle and kind; patient and thoughtful; funny, affectionate, and curious. His passions included sharks and other deadly predators, the New York City subway, Star Wars, and John Bellairs' mystery novels - born on Friday the 13th, he was drawn to the spooky and villainous. Another great love was music: The Beatles, Simon & Garfunkel, The Beach Boys, Stravinsky's Firebird, "The Imperial March" (Darth Vader's Theme) and the film scores of John Williams. He was quick to laugh, with a great sense of humor. At our first exploratory meeting with Make a Wish, he told the volunteers he would like to "see - and get sucked up by - a tornado;" "go to outer space;" "meet a great white shark," and "be Darth Vader."

As a big brother, he was incredibly loving. Julian and his three-year-old sister, Nina, loved playing hide-and-seek, listening to music , and watching Frozen and Frozen II together. He was delighted to welcome his baby brother Arthur in December 2024, reading him Fox in Socks and calling him "a cutie," even when he woke the entire family up with his early morning cries.

Julian's even-keeled, empathetic nature shone through throughout his 22-month battle with DIPG.  A few days into our first hospital stay at NYU Langone at the time of diagnosis, we were stepped down from the pediatric ICU to the regular pediatrics floor. When they wheeled Julian out of his hospital room, he said brightly: "now somebody else can have our room!" He was an unusually generous kid, always thinking of others.

After a successful six-week round of radiation, Julian was able to return to school in mid-January 2024. He finished kindergarten and attended summer camps that nurtured his passions, including weeks at the New York Aquarium and the Central Park Zoo. During these months, he participated in a clinical trial at the University of Michigan; we'd travel to Ann Arbor once a month for a check up and to pick up his meds, and sometimes for an MRI. As always, it was a joy to spend time with Julian on these trips, watching Star Wars, playing games, and eating some of his favorite foods - donuts, pizza, and the kids' steak at Zingerman's Road House.

Unfortunately, his symptoms began to return in August of 2024, and in September, after going into respiratory arrest at home, he landed in the hospital for three weeks. During this time he lost the ability to walk. Despite being wheelchair-bound and unable to attend school (unfortunately most New York City public schools are not accessible, and this was the case with Julian's), he still took so much pleasure in life. He loved building complex Lego sets; watching his favorite movies; reading Who Would Win?, Eerie Elementary, and Dog Man; and playing Uno and Connect4. Visits from the wonderful staff and volunteers at MJHS (the only hospice service in the NY metro area with a pediatric arm) and DOE home instruction teachers kept him engaged, and he worked hard with the wonderful physical therapists at the Stephen D. Hassenfeld Clinic to regain his mobility, nearly always with good cheer. Unfortunately, he suffered more setbacks; a life-threatening case of metabolic acidosis brought on by a drug he'd started in late December, after coming off the Michigan trial, and progression in March 2025. 

Still, Julian remained in good spirits and, remarkably, continued to think of others. With all he was enduring, it was deeply moving to witness the way he always remembered to ask after friends and family who were in pain or sick, even with things like run-of-the-mill stomach bugs. 

Near the end of June, near the peak of his improvement following a third and final round of radiation, he was playing with a deck of "Would You Rather?" cards with a hospice volunteer he loved. She read him the prompt: "Would you rather heal yourself or others?" Julian's answer, of course, was "others."

HOW YOU CAN HELP

Julian died peacefully in our arms on the night of August 12, 2025. We, his parents, seek to honor his memory by keeping his compassion and kindness alive. It is in that spirit that, with the help of dozens of donors from our community, we have founded the Julian Jao Patient Assistance Fund at the Stephen D. Hassenfeld Children's Center for Cancer and Blood Disorders, a permanently endowed fund that will be disbursed annually, in perpetuity, to provide essential assistance for children with cancer and their families.

Throughout his illness, Julian spent a lot of time at Stephen D. Hassenfeld - for regular check-ups with his oncologist, Dr. Jessica Clymer; for PT appointments; and in the last months of his life, for medication infusions. The patients in treatment there are from all walks of life. Many do not have the financial means or community support that allowed us to keep our focus squarely on Julian's physical and emotional health. Families of children with serious medical conditions experience intense hardships that impact their mental, emotional, social, and financial wellbeing. They may have little prior experience in advocating for their child in a complex and at times confusing healthcare system, and may not speak English as a first language. Financial worries can exacerbate this stress enormously. To help lighten the burden, Stephen D. Hassenfeld maintains a Patient Assistance fund, which covers needs like medication, transportation - an enormous cost in New York City for those who visit the clinic frequently and can't take the subway with their sick kids - food assistance, and more.

We are deeply moved to have the opportunity to help other children and caregivers facing this terrible ordeal, in our beloved Julian's name and memory, via the Julian Jao Patient Assistance Fund. If you are moved to contribute in support of these families, your gift will join others to make a difference in the lives of New York City families enduring the unimaginable. 

If you prefer to donate by check or Donor Advised Fund, please contact Melissa.Decesare@nyulangone.org for instructions. Be sure to check if your employer has a matching gifts program - this is an easy way to enhance and in some cases double your contribution. 

Thank you for reading, and much love to you and your family.

Lindsey & Jonathan