Marley was our “Rainbow” baby, and just perfect. She was diagnosed with Right-Torticollis, which is a stiffening of the muscles on the right side of her neck that attributed to the lack of muscle development on her right side, and the flatness of her head, called Plagiocephaly. At that time she was also diagnosed with Aniridia, a condition when an infant is born without the appearance of iris tissue. The iris tissue is there, but the muscles that control the opening and closure of the iris is not, and therefore the infant has a black pupil and a white sclera. We could not determine exactly how much Marley’s vision was affected by this condition. Some Aniridia patients have 20/40, some 20/200, and some even less. The chances of Glaucoma and Cataracts increase substantially and can be seen as early as in their teens, with some Aniridia patients developing blindness. Aniridia can be inherited or manifest as a sporadic instance. She will continue to be closely monitored for symptoms and scanned every 2-3 months for tumors. She has been under physical and vision therapy provided by Delta-Gamma for 3 weeks now, and since has advanced extremely well. Marley will start getting occupational therapy from Delta-Gamma as well. She sits up with very little help, she reaches and uses both her arms and legs, and is even strong enough to stand on her feet with help to balance. She an outgoing and energetic little girl.
Our insurance believes that a Cranial helmet for Marley is not a medical necessity, but a cosmetic choice that we have chosen to do. The back of Marley’s head is in the 98-99th percentile, which means it is completely flat in the back. This has become just the first of many challenges to come for Marley, we are working to get our baby what she needs to live a long and healthy life. She has beat the odds and is our little miracle. We are truly blessed to have her.