But, the bumblebee does not know that so it goes on flying anyway."
~Mary Kay Ash
On June 30, 2008, a journey began. A very special little boy named Brayden Alexander Harper was born. On that day the Harper family was given news that no family could have prepared themselves for.
“Brayden is missing his brain. He has Hydranencephaly. He will only live a few hours, or at most, a few months.”
With those brief, harsh words, the doctors turned and left the room. The Harpers were left with less information than they had started with, and with a diagnosis that receives little to no attention in the medical community. Hydranencephaly is a diagnosis that carries with it the prognosis of “death within the first year”. To the majority of the medical community, living without what is considered the primary component of the human brain, the cerebral cortex, is paramount to not living at all.
Instead of letting this diagnosis and the attached prognosis, defeat them, Alicia Harper and her family, elected to defy this common misconception. They elected to research, learn, and depend upon the fact that there are many obvious mysteries that lie within the human brain.
Alicia’s pregnancy brought with it great turmoil, from the moment of the first abnormal ultrasound. She often found herself in battle with doctors who wanted to convince her to terminate this pregnancy. They felt it would not last until birth, and so made no efforts to provide proactive care. While the many ultrasounds showed an obvious brain malformation, the formal diagnosis of Hydranencephaly was unknown until Brayden’s birth via cesarean section.
Once the diagnosis was delivered, the family was left alone without any information, resources, or support. Though referred to the social worker in the hospital for placement options and grief counseling “when Brayden dies”, and establishment of hospice care to see him through to “the end”, the family bravely took Brayden home rather than sign him in to the hospital until “his passing”.
There, the miracle began, and (as Brayden’s sister says) the Harpers “loved him to life”.
Thanks to the World Wide Web, a friend found the first Hydranencephaly information site called Rays of Sunshine. Through the wealth of information contained on that site and the correspondence through the Yahoo group of families across the globe, Alicia was connected with some of the most influential and awe-inspiring families she had ever known.
Their children were not dead by the age of one. Their children were not vegetables and they were not suffering in constant pain. They were living, they were conscious, and they were SMILING. While they were not without disabilities and obstacles to overcome, they were by no means a “lost cause” as the Harpers had been sent home told that Brayden was to be.
Alicia saw the hope in the children she would come to love, and found that there was reason to believe in the impossible.
Two years later in 2010, after receiving a donation collected from a loved one’s birthday celebration, and contemplating what to do with this gesture of generosity, to Alicia it became undoubtedly obvious. With her love of the children, and her love of Brayden at the forefront of her mind, she wanted to build upon the information, resources, support, and familial connections she had utilized to help Brayden grow and thrive.
From a donation of love, Alicia began the planning process. She wished to continue to help Brayden and all the other children in the world with Hydranencephaly. She wished to start an organization that would benefit these children and their families. She never dreamed how quickly it would come to fruition, growing into a reality a year later, and becoming a legal entity in the world of charities.
On June 14, 2011, the Brayden Alexander Global Foundation for Hydranencephaly was incorporated in the Commonwealth of Virginia. That early dream was made a reality, not by an old inspiration, but because of the new hope and inspiration that is Brayden Alexander!
As do all of our Hydranencephaly children, Brayden enlightened his mother, Alicia, to a life she feels she would have otherwise missed out on. Not only has he brought a new world to the Harper family, but to everyone who has met him in life or read about his struggles, joy and progress. As one of the smallest of little people, who cannot speak a word and is dependent on his loved ones to help him through his days, he communicates so much. He has a smile that lights the world, a little chuckle that warms hearts, and the opportunity Alicia has been given to share his story has changed many more little lives in some of the biggest ways. His strength, motivation, and determination have been engraved on his family’s heart and serves as fuel for Alicia’s passion to share all of our children with the world!
Alicia feels that the least she can do is to share that passion through this organization that will offer extensive hope to those who have had their hopes stripped away.
In tribute to Brayden, the Global Hydranencephaly Foundation offers hope by means of family resource and support networks. It will offer hope in the form of grants for equipment and services that may be otherwise out of reach to families. It will offer hope through research and informative literature, advocacy for families, foster/adoption care alternatives, and family-led support.
Our mission is parent-led, the true professionals in this world of unknowns. Sharing the journey of Brayden, our spectacled little smiley face, learning from other families, and allowing Brayden and all our other Hydranencephalic children to defy all odds against them, growing and thriving, will hopefully pave the way for the 1 in 10,000 baby. The baby with Hydranencephaly, who will come into the world facing a very long list of medically subjected impossibilities. And ultimately, giving parents and caregivers the world over, the strength and ability to “Believe in the Impossible.”
The Global Hydranencephaly Foundation wishes to thank Alicia and Brayden Alexander Harper for providing the groundwork, generous donations, and faith to get this organization off the ground. It is our desire to continue to build and grow the Foundation, in tribute to Brayden, and in tribute to the hundreds of children with Hydranencephaly we have known and loved over the years, those still thriving and growing, and those we have lost along the way.