It's that time again! Most of you are already aware of Ember's story but for those of you that are new to the entourage... Ember was diagnosed with the most severe form of Spina Bifida as well as a few other related conditions at our 20 week ultrasound. Spina Bifida is a neural tube defect where the spine does not fully close allowing the spinal cord to protrude in a sac outside of the body. Without the protection of the spinal column, the nerves on the spinal cord are irreversibly damaged. We were assessed for potential fetal surgery, but did not qualify due to an additional brain bleed they found. Within a few hours after Ember was born she was sent in for surgery to close the opening in her back to prevent further nerve damage and infection. A little over a month later Ember had another surgery to place a shunt to help stabilize the fluid in her brain.
All of that sounds a little crazy, right? Fast forward almost six years later and Ember is truly thriving and proving doctors wrong all the time. Ember is walking with only the assistance of braces and is progressing cognitively and socially just as any other kid her age. She is ridiculously smart and has perfected her princess attitude. Ember is absolutely obsessed with barbies, princesses, her brother, and doing her homework (not sure where she gets that from). While Ember continually runs into new challenges (shunt revision surgery, eye surgery, etc.) and will likely always have a bumpy road ahead of her, she has already proved she is the strongest and most resilient little girl we have ever known.
We participate in the Spina Bifida Association of Colorado's Walk and Roll every year to help them raise much needed funds to support local families affected by this condition that are less fortunate as well education and research efforts. More than anything we want to show Ember how much of a support system she has cheering her on every single step of the way.
Please consider donating to this cause that is near and dear to our hearts, but even more so, please join us for the Walk-N-Roll this year to cheer on Ember and all of the other Spina Bifida warriors. We will provide a free team t-shirt to anyone who joins us for the walk :)
Thanks for taking the time to read Ember's story and please join us for the walk!! -Andre, Keola, Ember & Brandon