Anae was born prematurely at just 28 weeks, weighing 2 lbs. 1 oz. She was intubated at birth and on oxygen for over a month. At 9 days old she was medivacked to CHOP (the Children’s Hospital of Philadelphia) because her body was shutting down. In addition to her severely decreased kidney function, she had a pericardial effusion, neonatal sepsis and needed two blood transfusions at about 3 weeks old. When she was 6 weeks old she had laser eye surgery in both eyes for Retinopathy of Prematurity; a condition that causes abnormal blood vessels to grow and can cause blindness. Anae spent the first 3 months of her life in the NICU. She was about 10 weeks old when she stole her parent’s hearts and became their daughter through adoption.

At barely over 4 lbs, at 3 months old, Anae came home. She wasn’t much bigger than a box of rice cereal. She arrived with a heart monitor, a nasal feeding tube and 7 medications that needed to be taken 12 times a day; including daily injections. Due to continued failure to thrive, she had a gastrostomy tube (g-tube) placed at 13 months old for feeds, medication and hydration. She had her g-tube for 7 years before successfully having it removed two years ago.

Because of her body’s inability to concentrate urine, any sickness that caused loss of fluids required hospital stays varying from several days to a week or so long. Because she was also immune suppressed, she got sick very easily (and often). Unfortunately, during those times of sickness she missed a lot of school, which affected her ability to receive continuity in her learning. Her parents felt that staying as germ-free as possible was critical to both her learning and ability to experience a meaningful, fun-filled life so they chose to homeschool her.

Anae has had Stage IV Chronic Kidney Disease for most of her life but unfortunately 6 months ago moved into Stage V; End Stage Renal Disease (ESRD). At the advice of her transplant team at CHOP, family and friends launched a social media campaign (A Kidney for Anae) looking for a living donor kidney as a living donor kidney greatly increased long term patient and graft survival rates. Though the miracle of friendly connections and Facebook, a living donor was identified, tested and just recently approved! Anae is scheduled for her kidney transplant on January 2, 2020.

Anae is a little fighter! She is kind and sweet. She is gracious and patient. She loves horse riding, art, science experiments, any kind of baking or cooking and is wildly creative. She shines a light of happiness everywhere she goes.

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. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.