AMC Angels

This week 4 children with AMC, ages ranging from just a few weeks old to thirteen years old, passed away in completely separate incidents relating to their AMC. When AMCers die the AMC community says they gained their angel wings and become AMC Angels.

Many AMCers and their caregivers don't have the opportunity to meet others like them in person because the condition is so rare. As a result the online community is very tight knit. We love and support each other the best we can from afar. To lose 4 of our precious kids in quick succession has been hard.

These families were already facing massive medical expenses and now have to face burial costs. AMCSI is an organization that does so much for AMCers like supporting research, holding events, offering scholarships, also providing families in these situations with money from their bereavement fund to help offset funeral expenses. If you would like to donate you can at https://amcsupport.org/donate/

In case you want to know more about AMC, here are a few facts:

*AMC = arthrogryposis multiplex congenita, multiple joint contractures present at birth.

*There are 400 different types of AMC.

*Nearly 1/3 of the children born with AMC do live beyond the age of 1.

*There is no "cure", although treatments range from surgery to casts, splints and LOTS of therapy.

*Some forms are genetic. However 1/3 of cases are the amyoplasia type, like Robbie's, which is non-genetic and sporadic in the population. There is no known cause for amyoplasia, although there are some theories. Also, Robbie's case is one of the more mild ones I've seen. His official diagnosis is atypical arthrogryposis.

*More facts can be found at https://amcsupport.org/amc-facts/

On Sunday April 28th, please join our AMC community in wearing blue to honor these 4 angels. Hold our community in your heart and send strength to the families moving forward in grief. #arthrogryposis #BLUEforAMC #BlueforLainey #BlueforIsabel #BlueforRayven #BlueforJedidiah #AMCStrong