Caroline was born in 1981. She has all of the main features of WAGR syndrome: she had Wilms tumor when she was 18 months old, she has aniridia, she has abnormal ovaries, and she has significant cognitive impairment. She also has chronic kidney disease, and many of the other health conditions associated with WAGR.
But Caroline is far more than just her diagnoses. Whether because of them or in spite of them, she has grown up to be an extraordinary woman. She lives semi-independently in a group home. She works part-time at a job she loves – as a prep chef in the formal dining room of a retirement community. She also volunteers three days a week at a local church, doing everything from office work to cooking and serving at luncheons. Her hobbies include music and films, and live theater. She is an avid bowler with Special Olympics, and has won an impressive number of medals. She also loves to knit, and has made hundreds of baby hats, which she donates to a charity for sick and premature infants called Threads of Love. She has many friends, and although she enjoys dating she’ll tell you she hasn’t met that “special someone” yet. She is a loving, giving, brave, creative, funny and fun-loving person, and it is my great honor and privilege to be her Mom.
This is Selma. She is 1 year and 8 months old and lives in Norway with her mom, Andrea, and her dad, Simen. Selma is a very active and happy girl full of joy for life who loves to be with oth…
This is George. He is 6 years old and lives in the south East of England with his brothers Zachary (5) and Jacob (8).
George is such a light in our lives. He loves nothing more than listening…
Mia lives in the USA and is 2 and a half years old. She has two rare syndromes called WAGR-O and Potocki-Shaffer. Mia was diagnosed blind at 6 months old and at 10 months they gave us genetic…