Welcome to Team Hayden HA WALK Page
Hayden was born December 1, 2013 weighing 1 lb 4 ozs, 12 inches long at 26 weeks gestation. From day one, all he has done was fight for his tiny life, he is the definition of fighter! Being born a micro-preemie came with a lot of hurdles and battles, he has suffered a grade 3 & 4 brain bleed which resulted in Hydrocephalus. Hayden has feeding and swallowing difficulties that have left him needing a G-tube placed at one year old for nutrition, speech and fine motor disorders, Spastic Diaplegia Cerebral Palsy, Slit-like Ventricles from being shunted so tiny, and ADHD. Due to his Hydrocephalus Hayden has what is called a VP shunt placed to help drain the spinal fluid in his brain. There is a catheter in his head and a tube that runs all the way down and drains in his tiny belly. Because a shunt is a "machine" it can malfunction or just stop working at any given time, and the fluid that is supposed to flow and drain to his belly will stop, resulting in the pressure building up in his head. When there is a malfunctions, Hayden gets very sick. Sometimes there are warning signs overtime, soemtimes there is no warning at all, just a matter of hours between when he is "fine" and then all of a sudden critical. The only way to make him better is brain surgery! There is no medication, there is no special treatment, just brain surgery. Hayden has endured TWELVE brain surgeries to replace his shunt, his most recent revision July 2, 2019. One week after his twelfth revision, on July 19, 2019, Hayden under went Bilateral Subtemporial Decompression (Crainectomy) to relieve the pressure that was still building up in his brain despite having a working shunt. At just 5 1/2 yrs old this is unacceptable and much more needs to be done to help families living with hydrocephalus. As his parents there is hardly anything we can do to make this terrible disease disappear. But the one thing that we can make sure of, is that we try to raise as much awareness as possible, everyday. To help create an amazing team to help us support, gather together, and raise donations so that we can find a C.U.R.E. These children should not have to continue undergoing brain surgery after brain surgery!
Please join us as WE WALK to End Hydrocephalus! A shunt is not a cure! Many patients endure multiple brain surgeries throughout their lifetime, some more than 100. Imagine life knowing that the next brain surgery lurks around the corner because your shunt could fail at any moment. No one should have to live like this. This is WHY WE WALK and also why WE need your support. Please consider donating and help us reach our goal. Help us to say #NoMoreBS (No more brain surgeries). Join our team and walk with us, place a small donation, or help to spread awareness about Hydroceplalus. Your donation is greatly appreciated and will go far in helping us find a cure and improve the lives of people living with hydrocephalus
From the bottom of our hearts, WE THANK YOU!
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