This week I found out that despite her tremendous will and fight, Quinn had to be intubated. I cannot begin to imagine the feelings of desperation and defeat that must be felt when you put everything you have into saving your daughter and protecting her only to have to watch her continue to struggle. I have learned that as EB ravages the bodies of these precious children, it also does a number on the minds and hearts of the parents. Whenever there may be a glimmer of hope, it is often shattered, leaving the parents feeling broken and lost. The emotional toll it takes is incredible…I have seen it first hand. The amount of strength and courage required to face the daily challenges and the pain not only of the child, but of their parents is something that I cannot even put into words. Please continue to pray for Quinn and all of the EB babies.
Butterflies are a breath of beauty fluttering by, they are mystery chronicled upon wing, they bring forth the grace and wonder of this world to our eyes everyday
Quinn is one among many who must endure the ugliness of EB. You can find out more at EB Part of the Cure Please help to help all the children like Quinn, give them hope, be their voice. Let 2012 be the year for the cure!
Please follow Quinn’s story at Quinn’s Caring Bridge page