Zekie’s Posse with MTM-CNM Family Connection
We are the Griese family. Our 4 year old son Ezequiel has a rare condition called X- Linked myotubular myopathy. This is a rare condition that impacts his neuromuscular systems. As a result of this condition Ezequiel and others like him are dependent on ventilators and tracheostomies for life sustaining care. Other afflictions are they are unable to walk or move on their own.
Many of these boys, like our son, are highly intelligent, energetic, love life and enjoy being part of everything. Our goals in participating in this race are to raise awareness about the rare condition to help bring support to the community as well as to raise funds for MTM-CNM Family Connection which is an organization created by a family who has faced these same challenges first hand. Their organization brings families like ours together for support, information, as well as supporting research to aid our children afflicted by this rare condition. It is our hope to some day soon find a cure, and while we work towards that cure we help with awareness and understanding to build support for our families.
