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 results where they told us about her syndromes. Mia has various problems in her vision - she has two cataracts (one in each eye), nystagmus, and aniridia. Mia has check-ups every 3 months for wilms tumor (which have been clean so far) and every 6 months for glaucoma. Mia has undergone two procedures to get ear tubes and her G-tube (which is how she is fed due to a silent aspiration). Mia has suffered from seizures, and also has two holes in the skull that measure about 1 and 2 cm. If that was not enough, she also has a mass growing in her right arm above her elbow. None of that has taken away her smile and she has brought out her courage and strength to face all this!!
Mia receives all kinds of therapies - physical, occupational, speech, feeding, visual and aquatic and she is doing amazing. She has advanced in all her therapies we are very proud of her.
Mia has a little brother who has been her blessing and help. Mia is a very happy and truly strong girl. She loves to be in the water, she loves to listen to music, she is happy when she is outdoors and finally she loves to roll around the house. She is a truly happy girl. Mia is a loving and caring princess who is loved by all who know her.
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886