There are innumerable organizations/causes/charitable efforts in need of an outpouring of support, I know. The craze that was the ALS Ice Bucket Challenge that swept the world last summer was incredible for a cause that had previously had little name recognition. While I know that my one little blog post today will not come near to bringing about the same kind of response, I'd love to share one of the research initiatives affecting my loved ones and ask you to consider sharing your support for it today.
This is my adorable nephew, Braydon...
Braydon was born with hydrocephalus, a condition causing an excessive pool of fluid on his brain, and had a shunt placed immediately to allow the fluid to drain. Over the next few months he had ups and downs as he began to have difficulties with the shunt malfunctioning and other related challenges. Appointments with eye doctors, neurosurgeons, orthopedic specialists, and physical therapy quickly became his weekly routine. And in the middle of it all, it was discovered that Braydon has a condition called holoprosencephaly. The simple explanation of holoprosencephaly is that where the human brain normally is divided into two lobes, Braydon's brain is one undivided lobe.
The National Human Genome Research Institute goes into more detail with this description...
Holoprosencephaly is a disorder caused by the failure of the prosencephalon (the embryonic forebrain) to sufficiently divide into the double lobes of the cerebral hemispheres. The result is a single-lobed brain structure and severe skull and facial defects. In most cases of holoprosencephaly, the malformations are so severe that babies die before birth. In less severe cases, babies are born with normal or near-normal brain development and facial deformities that may affect the eyes, nose and upper lip.To look at my Braydon's calendar of appointments is exhausting. But he impresses the doctor's and therapists every single day. He is a happy little boy developmentally improving despite all his diagnoses and expected outcomes. His next major hurdle is to have reconstructive surgery to reduce the size and misshapen-ness of his skull caused by the excess fluid. It's a scary procedure, and one my entire family is confidently praying he makes it through with flying colors.
I'm sharing this personal story with you today to help bring awareness to the Hydrocephalus Association's #GiveHope campaign.
Coinciding with #GivingTuesday, all donations made to the Hydrocephalus Association today, December 2, 2014, will be generously matched. A little bit of money may not always go a long way, but a tiny gesture can be enormous in bringing hope and the outlook of positive outcomes to families who are living and loving their children through everything.
Interested in following Braydon's Journey? Click here.
Want to learn more about hydrocephalus? Click here.
Want to learn more about holoprosencephaly? Click here.
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