W.O.B.E. Foundation
What we do?
Our mission is to offer assistance and resources to families who have been affected by Myotubular Myopathy (MTM), Centronuclear Myopathy (CNM) and/or ventilated tracheotomy in childhood.
Our passion project - WOBE KITS
* The WOBE KIT = 2 circuit covers and 4 hearts
* Circuit is the scary and ugly medical tubing that provides the support to breath
* With a fun fabric cover they become an extension of themselves, that doubles to insulate the tubing and prevent water buildup
* Our unique Velcro design allows our covers to be changed anytime, anywhere, any occasion or just for fun
* Fabric hearts become the support that families need to feel close to their baby even when they can't be there
* Switching the hearts between baby (of any age) and the family member helps transfer smell and feeling comfort
* One for baby; one for you kept close to your heart never feel apart
Why WOBE?
The Story of Everett
* January 13th, Everett was born not breathing and "floppy"; he was intubated, put on life support and life flighted to a level IV NICU hospital, 2 hours from home.
* He wouldn't be diagnosed until 3 months of age with a rare Neuromuscular condition called Mytobular Myopahty
* At 2 months old, his family made the educated decision to give Everett the life sustaining tracheotomy surgery
* 5 months later he would finally come home, with 24/7 ventilation and many other pieces of equipment
* Myotubular Mypopathy (MTM) made Everett's muscles severely
weakened but it did not damper his full spirit and bright personality.
* He touched all who knew him
* His parents determination to not let his "extra" needs hold him
back; they did all they could and never took no for an answer so
Everett could experience the world.
* The need for specialized equipment including special seating
and monitoring systems with better battery life is often what holds
back children like Everett from seeing the worked; not their condition
* W.O.B.E FOUNDATION was founded to help bridge the gap between what insurance pays for and what these children need to fully experience the world around them.
WOBE was the Rhino, given to Everett before he was born and stood for Watch Over Baby Everett. Now W.O.B.E. stands for Watch Over Babies Everywhere. Together we can make the difference in children's lives.
Will you help us?
