Lily’s Journey…

LilyAnna Spring Williams, known to most as Lily, is a beautiful, sweet, and fun-loving happy 13-year-old girl who has been quietly facing an incredibly difficult journey with chronic kidney disease. If you met her, you probably wouldn’t even realize how sick she truly is. Her laughter, energy, and bright spirit hide the challenges she endures every day; to know her is to love her. She loves to play with her two brothers and two sisters and cherishes every moment she gets to spend with her cousins. Through everything she has endured, she has been given something priceless: hope. Lily is preparing for a kidney transplant, a life-changing opportunity that brings the promise of better health and a brighter future. Lily’s Journey is filled with challenges as she prepares for what lies ahead, but she approaches each day with courage, joy, and a remarkable strength of heart!

In August of 2024, routine lab work revealed that something wasn’t right. That moment marked the beginning of a long and emotional journey that led to a diagnosis of Stage 4 chronic kidney disease. Along with her kidney disease, Lily has faced multiple related complications, including: Nephronophthisis associated with a mutation in the NPHP1 gene, ectopic kidney, horseshoe kidney, hyperparathyroidism due to renal insufficiency, anemia due to chronic kidney disease, iron deficiency, and symptoms including polyuria and polydipsia. Over the following months, Lily endured countless doctor’s appointments, scans, tests, bloodwork, and frequent trips to New Orleans to receive specialized pediatric care. Despite the severity of her conditions, her doctors are often surprised by how well she feels and how strong she remains.

In July of 2025, after an extensive journey, Lily was officially placed on the UNOS kidney transplant list. Throughout this process, Lily’s mother has been walking beside her every step of the way, not only as her parent, but also as a potential living kidney donor. She has been undergoing the donor testing process, and we are incredibly grateful to share that she is a match! In February, she will complete another round of testing to determine if she can officially become Lily’s donor. Both the transplant list and the possibility of a living donor bring tremendous hope to our family and to Lily’s Journey!

Along the way, Lily began experiencing significant leg pain. Although it was unrelated to her kidney disease, it led us to Shriners Hospital in Shreveport, where doctors discovered she has a severe case of knock knees that required immediate surgical intervention. Lily recently underwent surgery in which screws were placed in both knees and is now facing a six-week recovery period. Just as she began preparing for this surgery, we received difficult news: Lily’s kidney disease has progressed to Stage 5, and a kidney transplant is now urgently needed. With all hope, once she has fully recovered from her knee surgery, Lily will be able to move forward with her kidney transplant as soon as possible before dialysis becomes necessary.

There are no hospitals in Louisiana outside of New Orleans that have pediatric nephrologists and can perform the transplant Lily needs. After the transplant, Lily will be required to remain in New Orleans for three to six months due to immunosuppressant medications, ongoing aftercare, and weekly follow-up appointments at Manning’s Family Children’s Hospital. During this time, she will not be able to return home. Additionally, Lily’s mother will be out of work throughout this process as she supports her daughter through surgery, recovery, and if approved, her own donor surgery and healing.

The costs of extended travel, lodging, meals, and lost income add up quickly. This GoFundMe has been created to help cover travel and lodging expenses and basic living needs, allowing this family to focus on what matters most, Lily’s health, healing, and future!

Every donation, no matter the size, makes a meaningful difference. If you’re unable to give, sharing this page and keeping Lily and her family in your thoughts and prayers means more than we can express.

Thank you for being part of Lily’s Journey and for helping carry this family through a season filled with both challenge and hope.