Gabe's Story:
Dear Friends,
Our son Gabriel was born with Arthrogryposis Multiplex Congenita, which roughly translated means contractures of the joints and atrophy of the muscles. His legs were crossed behind him touching the middle of his back, his arms hung loosely to his sides showing no signs of movement, and his body curved sharply into a "C" position. We did not know about his condition until he was born. Once we received a diagnosis we quickly began researching for more information and found very little other than this online support group started by a young mother whose 5 year old daughter has Arthrogryposis.
AMCsupport has been a lifeline for us as we walk this path with Gabriel. From braces, surgeries, casting, and muscle transfers, to visits with genetics, neurology, multiple therapists and surgeons, this online community allows us to post questions and receive other parents’ ideas and strategies for dealing with this disability. We travelled to Texas last year to meet all the families at the 2nd annual convention. There I was able to see kids and adults of all ages living life with this disability, but more importantly living life fully.
I have since been elected to the board of directors for this organization and am one of the chairs for this year's convention to be hosted in Dublin. Ohio. We do not charge a fee for this convention as the medical costs for most families can be quite high. As one of the chairs, it is my job to plan for speakers, information sessions, children’s activities, food and family support time.
The AMCsupport convention is being held on July 17th-2oth. A silent auction is to be held in my home on May 30th to offset the cost for families who are unable to afford attendance as well as to help fund much of the programming.
Our family has just received news that Gabriel will be going through another round of surgeries in the middle of June in Philadelphia Shriners. This is my last chance to raise funds for these families and this event. We have room for everyone, all children’s toys will be put away, and appetizers will be served.
I am envisioning this first annual gathering as a girl's night out, complete with desserts, wine, great conversation and the ability to give back to families in need. Most of us have been in a position where someone has graciously and gracefully helped us. This is a time to give back.
So please, bring yourself, a couple of girlfriends, have them bring a couple friends.... spread the word and you could be helping so many.
I have included two recent photos of my Gabe, now age 2 for all to see what having hope can accomplish.
I look forward to meeting you personally on May 30th.
Warmly,
MaryBeth Eberhard