oculo-auriculo-vertebral (OAV) syndrome (known as Goldenhar syndrome)
South Asia – Pacific
Listed: May 2018
Joely is full of energy and vibrancy. Joely was born with a cleft palate, a deformed/missing right ear, a small meningocele (soft fluid filled mass) at the back of her head, and Congenital Heart Disease – Atrial Septal Defect (ASD). In February of 2014, Joely was diagnosed by the genetics doctor with Oculo Auriculo Vertebral Spectrum. In 2017, she had an operation to repair her cleft palate; however, there are still two small holes in her palate which will need to be repaired again. Her surgeons have stated that her meningocele would need an operation in the future, but that it is not urgent. Her doctor recommends continual regular monitoring and checkups with a pediatric cardiologist, but does not see the need for surgery at this point. She shows no signs of heart problems at this time. Joely is fit and active and does not tire easily.
Because of Joely’s delays, she currently has weekly occupational and speech therapy as per recommendations. She really enjoys her sessions. Despite her wide range of medical concerns, Joely is really thriving. She started attending the local nursery school this year and is adapting well. Her teachers are very fond of her and she holds her own in a class of her peers. Although she is talking, her speech is delayed and she is often difficult to understand, especially for strangers. Her house parents understand her well. Joely is more than capable of making her needs and wants known using a combination of words with facial and hand gestures. She is independent and likes to do things by herself if she can, but will willingly accept help when needed. She follows her daily routine well. She has become more affectionate over the last 6 months and enjoys all the activities at the child caring agency, especially singing in the nightly devotions. Despite the holes in her palate, Joely is a good eater and enjoys all kinds of foods. She has friends within the center but can be a little rough with younger children. She does well with older children, as she models their behavior. She can be boisterous at times, but she has shown a much higher level of self-control since she started nursery school. Joely will continue to develop and catch up with the consistency and love of a forever family who have good medical resources and therapists at hand.
*Photos and video are available for seriously interested families. Joely is from a small Asian country. Per her country’s regulations, pictures and videos can only be shared with seriously interested families directly and are not allowed to be shared publicly. Joely’s file is listed with multiple agencies with a sending program from this country and approval is dependent on the head of adoption in this particular country.
There is a $500 agency grant for Joely’s adoption with a specific agency.
$1,000.10 has been donated towards the cost of my adoption!