Living With AMC

Relatively rare, AMC occurs in 1 out of every 3,000 live births. AMC is used to describe the presence of multiple congenital contractures. The phrase Arthrogryposis Multiplex Congenita describes a family of abnormalities and literally means arthro – joint, gryp – curved, congenita – are present at birth. While generally affecting the extremities, it can also affect the spine, cranial structures and central nervous system and can cayse death in some if not treated at the appropriate time, usually early childhood. Here in Staten Island, there are five documented cases of AMC. As with such rare conditions, there may be more cases that have not been reported.

Through the Music Festival, we are trying to raise money to help those families affected by AMC in our community and nationally receive the services they desperately need.

OliverOliver’s Story

Oliver was diagnosed with AMC during a 20 week ultrasound.  In addition to AMC he was also diagnosed with a Deep Inlet VSD (hole in heart). Oliver’s family looked to AMCSI for information during the pregnancy because doctors weren’t familiar with AMC.  Oliver was born naturally on August 3rd 2013.  He was admitted to the NICU where they found that the hole in his heart had miraculously closed.  He was discharged with his mother on August 5th.  Oliver was placed in leg casts for his club feet at 5 days old.  Due to the stiffness caused by AMC he was in casts weekly for 5 months instead of the normal 6 weeks it usually takes.  Oliver’s AMC also affects his hands; he was not able to open his hands fully at birth.  His thumbs are closer to his palm which makes grabbing things a bit of a challenge.  His fingers and wrists also drift towards his pinkies. Ollie has been receiving weekly hand therapy and wearing splints since he was 3 months old.

On December 31st 2013, Oliver’s parents were told that Oliver’s left hip was dislocated and he required immediate surgery and would be placed in a Spica cast (body cast) for 3 months.  In April, Oliver had his Spica cast removed and was immediately put into boots and bar for his feet.  In May, his parents found at that Oliver’s left hip had unfortunately dislocated again.  They were referred to Dr. VanBosse at Shriner’s Hospital in Philadelphia.  Dr. VanBosse confirmed the re-dislocation and will be scheduling an open reduction and placement of new Spica cast when Oliver is at least 18 months old (Dr. VanBosse also informed us that Valerie Pepe lived in Staten Island and encouraged us to look her up and introduce ourselves to her). In the meantime Oliver was re-casted for 6 more weeks to further correct his feet and then placed in AFO’s for 23 hours a day.  Currently Oliver and his family are waiting to be scheduled for his hip surgery at Shriner’s.  Oliver receives physical and occupational therapy through Early Intervention.

Oliver is a happy little man with 2 sisters and a brother.  He loves laughing and dancing.  He charms every person he meets with his gorgeous smile and dimples.  Oliver works hard every day to make progress.  He confronts every challenge with determination and perseverance.  He is truly a miracle and a joy to watch grow up.

JennaMeet Jenna

After a seemingly normal pregnancy which included several sonograms, Jenna Nicole was delivered in July 2004 via C-Section simply because she was in the breach position. She was immediately admitted to the Neo-Natal Intensive Care Unit where she stayed for the next 6 weeks. During that time, Jenna faced several life-threatening issues and was given a tracheotomy and a feeding tube.

With very little information to be found about AMC, Jenna’s parents turned to AMC Support, Inc., and Shriners Hospital for Children in Philadelphia for medical and support services.

At age 8, Jenna had already undergone 10 corrective surgeries and faced many more over her lifetime.
(Update on Jenna’s progress coming soon)