My niece Roni has been fighting a rare illness her entire life - quietly, bravely, and far beyond what any child should ever have to endure.

Roni has an extremely rare immune condition called STAT1 Gain of Function. Although she was sick from birth, she wasn’t officially diagnosed until the age of four. By then, hospitals had already become a second home. She has lived through countless extended hospital stays. Some lasting 30 to 100 days, often in isolation along with constant procedures, and more tests than can be counted.

Roni lives with a permanent gastric tube for nutrition and a port for blood draws and IV infusions. Much of her young life has been tethered to medical equipment. The moments she fears most are what she calls “pokeys” (needle sticks) after enduring more than most adults face in a lifetime. As a result, Roni now carries severe PTSD related to medical care, and while she desperately needs specialized psychological support, the waitlists for pediatric medical trauma care are painfully long.

Still, Roni keeps going. Bravest girl I know.

Earlier this year, she received a life altering bone marrow transplant, donated by her older brother—her hero—who was a 100% match. His selfless act gave her a chance at a healthier future, and their bond is nothing short of extraordinary.

Roni’s strength has inspired an entire community. She has become a symbol of resilience in her community, embraced as an honorary mascot by local hockey and baseball teams who rally around her courage.

Behind the scenes, however, the toll on her family has been relentless.

For nearly a year, Roni’s parents have survived on one income, carefully balancing hospital stays, caregiving, and maintaining a sense of normalcy for their 12-year-old son. Roni’s mom’s employer has been incredibly supportive and generous during this time, and the family is deeply grateful—but even with that support, the strain of constant medical care has been overwhelming.

Recently, just as they continue to steady themselves, their furnace unexpectedly failed, adding yet another significant expense during an already fragile time. These moments—unplanned, unavoidable—are what push families who are already stretched to their limits.

Roni is not yet healthy enough to return to school until at least the end of April, missing much of her first-grade year. Her parents continue to tag-team care—one working, one with Roni—doing everything they can to hold their family together while supporting her recovery.

Each member of this family carries their own weight:

I am starting this GoFundMe because I am desperate to find help for them because it is heartbreaking to watch my sister endure this let alone watching this brave little girl fight daily to stay healthy. It's even harder to see her entire family living under the constant pressure of survival.

Funds raised will help ease the many layers of stress they are carrying, including:

Giving this family space to breathe, heal, and keep going

If you are able to help through a donation or by sharing this page, you are offering more than financial support. You are offering relief, compassion, and hope.

Thank you for seeing Roni. Thank you for honoring this family’s strength. And thank you for helping them through a chapter no one should have to face alone.

With heartfelt gratitude,

Aunt Amy