My son, Brayden Alexander, is the inspiration for this endeavor. On July 1, 2008, the morning after his birth with hydrocephalus, we were given a very grim prognosis. One that carried with it an expiration date of no longer than a year, but closer to a few weeks. In a foggy moment, we were introduced to the diagnosis of hydranencephaly.
Hydranencephaly is a rare neurological condition that occurs in less than 1 in 100,000 births across the globe. There is no known cause. There is no cure. There is no treatment. Brayden essentially is missing a majority of his cerebral cortex, we were delivered this news with the words, "he is missing most of his brain, surviving solely on his brain stem." Furthermore, we were told he would never survive, that if he did he would be in a vegetative state. He would never eat, nor see, nor hear, and he certainly would never recognize any of this loved ones. Any movements he made were said to be refluxes, that they would go away and his body would slowly shut down. He would need a feeding tube, eventually a ventilator, and would suffer violent seizures for the rest of his days.
Brayden will be 3 years old when his birthday arrives. He does not have a feeding tube, he loves to eat everything else we give him as long as it isn't a green bean. He is not on a ventilator, nor has he ever been. Seizures, they're new to him, but they're far from violent and well managed with anti-seizure medications. Aside from the placement of a shunt to drain excess fluid from his head, decreasing the uncomfortable size it had grown to prior to birth, he has been the epitome of health. He gets colds, every kid does, and they're scary since a cold could wreak havoc on his little body... but he's a fighter and we have always believed in him.
That optimism and ability to believe in him did not come easily. It came from unwaivering support from across the globe. Had I, as his mother, never networked with other families facing this diagnosis, Brayden would not be here. He would not be the smiling, happy, chuckling little boy in the adorable blue glasses that everyone has come to love. He would not be the inspiration to everyone who knows his story. I owe his life to that support.
Support doesn't come easy to every family facing this diagnosis. Being handed a print-out about this diagnosis in the hospital upon birth, in the event that the doctors have not convinced the parents to terminate the pregnancy upon early detection, is the scariest moment in any parent's life. Being sent home on hospice, if the parent has the strength to take their child home at all, is like falling in to a black hole of doom. Listening to the long list of things your child will not do, like live, does not exactly put a glimmer of hope in your days. Wondering if every breath will be the last is no less than excruciating.
Fortunately, it doesn't have to be that way. It shouldn't be that way. In an effort to shine a light on this diagnosis, to show the amazing life that these children are capable of having, this foundation is being created. Providing the support to families to get access to the resources they need, the equipment they should have, and the knowledge they need as ammunition against a pessimistic medical community is the ultimate goal.
There is hope, I believe that without a shadow of a doubt. Education will help change those misconceptions that poison the minds of those carers we rely on as parents to help us help our children. Sharing our children's lives with as many as we're able, that will help instill a more positive outlook on their little lives. Every one of these children have a smile that could light the darkest of nights. They have their limits, they require extra care... but by no means are any of the children suffering with nor dying of this condition. They are living, and in doing so they are teaching others how they should live as well.
|Brayden's First Day at Preschool|
February 15, 2011
Please share this journey with others and support our cause. There are many wonderful goals for this foundation, I assure it will continue to grow and flourish and help many families along the way. I have spent my days since Brayden joined our lives doing extensive research which is chronicled in my blog Small Portion of a Life's Journey. In taking that research a step further, while paying it forward the support I was fortunate enough to have in the earliest days and every day since, this foundation will be the stepping stone to changing the lives of these little miracles...and the families who are blessed by them.