Anna’s Story: Navigating ANCA Vasculitis and Kidney Transplant

Meet Anna

After an unexpected diagnosis changed everything, 10-year-old Anna and her family faced months of dialysis, countless treatments, and a long wait for a kidney transplant. Through every challenge, they found hope, resilience, and joy in the people who walked beside them.

The Beginning

Anna's journey began with a diagnosis of ANCA vasculitis, a rare autoimmune disease that severely damaged her kidneys. What followed was an intensive three-week hospital stay filled with dialysis, apheresis treatments, IV immunosuppression, and an overwhelming amount of information to absorb.

For Anna and her family, it was a crash course in pediatric kidney disease. While the days were difficult, they were supported by an incredible medical team that answered countless questions, shared laughs, and helped make an unimaginable situation feel just a little more manageable.

The Challenge

After leaving the hospital, Anna began outpatient dialysis three days each week. Every treatment required more than an hour of travel each way, followed by three to four hours connected to the dialysis machine.

The physical toll was significant. Even on days without treatment, she struggled with exhaustion and nausea. Anna missed most of fifth grade and half of sixth grade, relying on home and hospital instruction while waiting for the minimum one-year period required before she could receive a transplant.

Her parents both hoped to donate a kidney but learned they were not compatible matches.

Finding Strength

Throughout the journey, Anna found strength in the people around her.

One of the biggest sources of comfort was the hospital's Child Life Team. They used models and beads to explain her condition, taught her coping strategies for procedures, and brought moments of joy through therapy dogs, music, art, and LEGO sets. They cared not only for Anna but for the entire family, helping create happy memories during one of the hardest seasons of their lives.

The hospital staff also unknowingly sparked another bright moment. Nearly everyone asked Anna if she had a pet. She took full advantage of the opportunity to convince her parents, and before long, an orange kitten named Cheddar became the newest member of the family.

When direct donation wasn't possible, Anna's family turned to the National Kidney Registry. Her father participated in an advanced donation in June 2024, allowing another patient to receive his kidney while helping Anna move closer to finding a compatible match through the registry.

Today

After one year and four months on dialysis at age 12, Anna finally received an excellent kidney match through the National Kidney Registry and underwent a successful transplant.

The first few months required patience as her body healed, but today 13-year-old Anna is thriving. She's back in school, playing percussion in the school band, traveling for competitions, and recently performed as Mrs. Puff in her school's production of SpongeBob the Musical.

She also serves on her hospital's Youth Advisory Council because she wants to help improve the experience for future patients and families walking a similar path.

Anna's Message

Kidney disease changes life in ways you never expect, but it also reveals incredible strength, compassion, and community.

Even during the hardest moments, there is hope. Lean on your medical team, accept support when it's offered, celebrate the small victories, and remember that brighter days are possible.

Join Our Community

Every family's journey matters.

If Anna's story resonates with you, we invite you to join IROC Family Partners to connect with other families navigating pediatric kidney disease, or share your own story to encourage others walking a similar path.