about

 

beatles picWe would love for you to take a few minutes to meet our son Riley. He is an amazing little boy that brightens any room with his smile and contagious laugh. Riley's character and personality are larger than life, and he is not afraid to show it. Everyday he surprises us with how much he knows and how incredibly smart he is. He is the coolest kid we know and most of all he is our best bud.

Riley was born prematurely at just 34 weeks into the pregnancy, at Southside Hospital in Bayshore, Long Island on December 27, 2004. He was 4 lbs 3 oz and 17.5 inches long, and was in the NICU (Neo-Natal Intensive Care Unit) for 15 days before he came home. Immediately after he was born one of the nurses noticed a skin tag that had formed just in front of his right ear. Otherwise he was quite healthy for a premature baby and there were no reason for us to worry.

At first sight of him we knew Riley was the perfect name for him. It was easily the best day of our lives. Shortly after, we were informed of some other abnormalities. In addition to the skin tags, Riley also had some asymmetry in his face, his right side was slightly underdeveloped, his nose was slightly crooked, and how his lower jaw favored the right side. There was also a possibility his right eye was affected. The first question we had was..."Would he be ok?" The doctors assured us he would be just fine. The pediatrician came to us and let us know there would be a geneticist down to see him first thing in the morning and he would be conducting some tests.

mom dad and riley That night the geneticist gave us news that would forever change our lives. He informed us that Riley was born with a birth defect called Goldenhar's Syndrome, also known as Hemifacial Microsomia. Goldenhar's Syndrome is a rare birth defect. Some researchers estimate it occurs in 1 out of every 3,500 to 5,000 births. Diagnosing Goldenhar's is not easy because the condition has many characteristics that are similar to other syndromes. It is marked by a combination of eye, ear, jaw, skull and vertebral abnormalities, tissue growths and facial clefts. Some children also have heart and spinal problems. Other complications are possible. Riley has been affected by the following characteristics, which can be corrected by surgery:

- Partially missing and underdeveloped lower jaw
- Benign growths of the eye (Both Lipodermoid and Epibulbar Dermoid)
- Skin Tags in front of both ears
- Some form of Microtia

We have been seeing a Craniofacial team at NYU Medical Center in New York City which consists of a plastic surgeon, an ear, nose, and throat Doctor, a pediatric dentist as well as an Orthodontist, an Otologist, Speech Therapist, and a few others we haven't met yet. Riley also has regular visits with a Pediatric Ophthalmologist, and his Pediatrician. At times this is a bit overwhelming, but with much research and personal recommendations we feel very confident with this team of doctors. Unfortunately some of these doctors do not participate with insurance companies so we are required to cover large medical bills up front. As a result, some of Riley's closest friends and family members have started "The Smiley Riley Fund". It is a Non-Profit Organization that will be used to offset some of the bills we will receive. (For more information on how you can help click here)

As far as general health is concerned, Riley's pediatrician has told us he is developing right on schedule and is attaining milestones and goals just as any baby would. We are very thankful for what we have: we have been blessed with an amazing little boy who has changed our lives in many ways. We know he has a long road ahead of him despite his progress so far with the love and support of his family and friends. It is important to us that he is treated like a little boy first, and a patient second.

We would like to thank you for taking the time out to read about our Riley. Something of this nature can't be done alone and therefore we would like to thank our family, friends, the many individuals who have helped us already, and the ones who will help us in the future. Because of you, we are able to offer Riley the medical attention he needs.

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