COTA for Vanessa

Our Story

Vanessa is a social, charismatic 3 1⁄2-year-old with a whole lot of sass! You will find her walking the halls waving and saying hello to everyone. She loves to dance, sing, and play with her big brother Vince. She brings so much laughter and joy to those around her. Soon, she will be back in preschool where she loves to be!

On November 26, 2018, at St. Joseph’s Hospital in Tucson, Arizona, Vanessa Rae was born. She was 4 weeks early following a complicated pregnancy with high alpha-fetoprotein (AFP) levels. After about a week in the NICU, the nurse noticed swelling on Vanessa, which prompted further testing. Albumin, a blood protein responsible for keeping fluid in our blood vessels came back nearly undetectable. Vanessa was then transferred to Banner University Medical Center in Tucson to be evaluated by a nephrologist. 

Vanessa was diagnosed with Congenital Nephrotic Syndrome (CNS) of the Finnish type. Children with CNS lose proteins in the urine that put them at risk for frequent infections, swelling, and blood clots to name a few. CNS does not typically respond to medications and the only curative therapy is kidney transplantation.

After several weeks at BUMC in Tucson, Vanessa was air-lifted to Phoenix Children’s Hospital where she would receive extensive treatment including frequent albumin infusions. She had numerous surgeries including having 1 kidney removed in effort to reduce how much protein she was losing.  You will find her sporting a mini backpack to help her carry her feeding pump. Vanessa has been on a feeding tube since birth, which has helped her thrive and continue to grow.

Vanessa reached end stage renal disease at 3 years old.  She began hemodialysis at PCH 4 days a week for 3 months. She has an incredible spirit and no matter what the disease has thrown at her she always overcomes and keeps on dancing!

On August 1^st, 2022, Vanessa was given a second chance at life when she received her new kidney donated by her father, Stephen, at Lucile Packard Children’s Hospital Stanford in Palo Alto, CA. Vanessa immediately took to her father’s kidney after transplant and after 11 days in PICU continues to make progress every day.  She will stay with her mother close to the hospital for approximately 6-8 weeks while she recovers and continues with follow-up care.  The care Vanessa has received from her team at Phoenix Children’s hospital and the Stanford transplant team has been nothing short of amazing!

Due to Vanessa’s age, she will need more than 1 kidney transplant.  The average living kidney donation is estimated to last 19 years.  Her condition is a lifelong journey. With the help of Children’s Organ Transplant Association (COTA), we are raising funds to assist with a lifetime of transplant-related expenses, including living donor expenses. All donations are tax deductible to the fullest extent of the law.  Please consider donating to COTA in honor of Vanessa. Thank you!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. 100% of each contribution made to COTA in honor of Vanessa will help meet transplant-related expenses for a lifetime as well as help with her donors expenses. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.