Hi everyone!
As most of
you already know, our son Joey was born with a rare birth defect called
arthrogryposis multiplex congenita (AMC for short). AMC is a
musculoskeletal disorder characterized by the presence of multiple joint
contractures. There are several different subtypes of AMC, some have
central nervous system involvement and others do not. The type Joey has is
called amyoplasia, (at least that is what we were told, there was never any
official testing done) and is the most common form of AMC. So, basically, in
addition to the presence of multiple joint contractures he also has
undeveloped and underdeveloped muscles throughout his body and absent nerve
conduction to some of his muscles. AMC varies greatly from one person to
another. Our son is most severely affected in the legs and to a lesser
degree in the arms, he has involvement in the muscles around the lungs and
in the abdomen. He has contractures (which limit range of motion) in the
toes, ankles, knees, hips, shoulders, elbows and wrists. He also has
scoliosis of the spine. He walks with the assistance of a walker and
tackles long distances with the use of a power chair. He started driving
his own power chair at the age of 2. Children with AMC, that do not have
central nervous system involvement, tend to be above average intelligence
and, in our opinion, Joey is a prime example of that, he's a smart little
boy.
Melissa is a
member of an online support group called amcsupport.org which operates under
the corporate name Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI).
The site has been in existence for the past nearly three years. We relied
heavily on the site for support and advice during the first years of Joey's
life. There is little known about AMC, therefore diagnosis, testing and
treatments are not widely practiced. Joey's diagnosis of AMC was at first an
incredibly "lonely" diagnosis for us. There was only one person we could
turn to for advice and support, which was the mother of a teenage boy whom
also had AMC that lived in our area . The problem was she was in the same
predicament as us, they had never met anyone else with AMC prior to meeting
us and treatments in the past were not as successful as they had hoped for.
When we finally found the site, we frequently turned to it to for advice and
guidance in Joeys care. The knowledge we gained about AMC from the parents
of AMCer's and the adults with AMC on the site was invaluable and was more
than we ever could've gained from the medical world alone. Amcsupport.org
was not only an endless source of information about AMC but Melissa has also
made forever friendships through the site. Now that Joey is getting older
(he just had his 4th birthday on November 7th) his surgical interventions
are become less frequent, therapy treatments are becoming routine and less
tormenting, and Joey's AMC has become less life-consuming. Melissa was
recently added as a board member for AMCSI and is excited about giving back
to the group that was so invaluable to her. It has become her mission to be
a source of compassion and advice to the new parents that visit the amcsupport.org
website in search of help. She is one of the members that serves as the
official "welcome wagon" to all new members and it has been incredibly
rewarding for her. The AMCsupport.org site is growing strong and fast and is
now approaching 500 members. AMCSI's website hosts very active forums where
people from all over the world come together for support. We have members
from Australia, Scotland, The Netherlands and The United Kingdom!
The mission of AMCSI is to provide and
encourage more understanding and mutual support among anyone affected with
the diagnosis of AMC and to create a higher standard of AMC awareness by
means of conventions, meetings, and studies. The group was founded by Ani
Vinson, the mother of a little girl named Abigail Vinson, whom is also
affected by AMC. For the last three years we have operated souly by the
support of our members. We have successfully held two incredible
conferences were those affected by AMC, from all over the United States and
even abroad, gathered to learn about AMC and share each others stories.
The first conference was held in Chicago, IL and the second was held in
Arlington, TX. Attendees were not charged a registration or attendance fee
and we had several professionals, such as doctors and therapists, speak at
the conferences. The conferences have been filled, for the most part, with
family members of those with AMC. These conferences will
most certainly continue to take place, however, we envision in the future,
conferences where physicians, surgeons, sonographers, therapists,
orthoticians and researchers can come together and learn about AMC. They
can discuss how to better diagnose AMC, we have heard disturbing and
unfortunate stories of mothers that have been asked to terminate their
pregnancies due to in utero misdiagnosis of AMC!! They can discuss how to
most effectively treat AMC and they can search for the cause of AMC.
AMC/amyoplasia is considered a rare
diagnosis (1 in 3000), there are not as many children affected by it as
there are children affected with down's syndrome (1 in 800). You might be
surprised to learn however, that it does affect more children than the most
common form of muscular dystrophy, Duchenne muscular dystrophy (1 in 3500)
yet we haven't gained near the recognition or support. AMC is a
musculoskeletal disorder that is very similar in appearance to spinal
muscular atrophy (SMA) which is a diagnosis also recognized and supported by
the Muscular Dystrophy Association (MDA) yet AMC is not a recognized or
supported diagnosis by the MDA because it is not considered a
progressive disorder.
With the
explosive and exciting growth that our organization has experienced in the
past three years, our cost of operation has increased. AMCSI recently
gained 501 (c)(3) status, therefore we are recognized as a charitable
organization with the benefit of allowing our donors to make tax deductible
donations to our cause. We are sending out this mailing for you to consider
and forward to your family and friends, so that we may continue our cause
and help to fulfill the mission of AMCSI.
