Ella's Journey - Craniosynostosis Awareness
Scars
** Ella's Journey - Craniosynostosis Awareness **
Craniosynostosis - the premature fusion of an infants skull.
Craniosynostosis - a rather large word for such a tiny person.
Our tiny person, Ella Claire was born with Sagittal Craniosynostosis. Never will we forget the first time we heard that word, not knowing what it meant but soon understanding it was a condition that needed to be fixed. As parents, hearing our precious new baby had this condition is frightening, scary and down right just broke our hearts. We cried.
Comfort. As days, weeks went by the one thing that gave us a sense of comfort was knowing we live just outside of Boston, yes the city whose children's hospital was named #1 this year - Boston Children's Hopital (BCH). How LUCKY, how FORTUNATE are we to have the #1 hospital 20 minutes away along with the best of the best doctors in the world right here in our city!
Faith. We must have faith in God, but also faith in our Doctor, the neurosurgeon, the one whose steady hands will cut through our daughter's skull and give her/us hope. Again, comfort knowing we have the BEST of the best here and we have him. Bless you Dr. Proctor.
Ella's "Cranio" journey had just begun. It's not going to be an easy road for her, or for us but from what I hear Cranio babies are STRONG, BRAVE and TOUGH and as parents of a Cranio baby, we will be too. From surgery, to helmet(s) therapy, to praying this will be her only cranio surgery, to having no vision problems, no migraines, no cognitive issues and that this will just be a "bump" in her life.
Knowing how fortunate we are living here amongst the best hospital, doctors and nurses (lets not forget our sports teams!!) we would like to not only spread awareness but to do something to help a Cranio family from another part of our country traveling to Boston for Cranio surgery. Choose a family that we can help with the possibly of air fare expenses, or hotel or maybe help with the cost of a helmet since insurance does not cover it all, if any. We are having a cranio awareness fundraiser on September 13 to not only spread awareness but to raise donations to help a child traveling to Boston Childrens for cranio surgery. For those who can not make the fundraiser we started this page so we can also donate to this BCH to say Thank you! We, for Ella want to help but we can not do it alone, we need you!!
Please check out our Facebook page Cranio Strong, like and share it to help us spread Craniosynostosis Awareness.
Thank you and God bless.
Paul, Cynthia and Ella Claire
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History By Year
2014
Posted on March 31, 2014
- The hospital's patient care programs are remarkably sensitive to what sick and injured children and their families really need.
- Researchers regularly make amazing discoveries that change children's lives.
- Boston Children's welcomes kids whose families can't afford health care—more than any other hospital in Massachusetts.
- Community programs make a point of reaching out to help low-income and at-risk kids.
And the hospital doesn't just stop there. Boston Children's truly understands the importance of training the next generation of top pediatricians and nurses, so they can continue to provide the best, most innovative care possible to kids.
Please support my fundraiser—and Boston Children’s Hospital.
