Team Hayden Bentley Brown

My baby boy has been diagnosed with a very rare brain disease that is terminal-fatal. He has lost all motor skills including walking, talking possibly at risk of loosing his vision and hearing. This disease robs him of his coherent life till the body just gives up. Updated 1/15/2017 Hayden Can no longer speak, Eat by Mouth, Drink any liquids at all, no longer has any control over his legs and 10% Remaining control of his arms basically unable to move himself in any way or sit up comfortably since Having a feeding tube put into his belly. He is still coherent and remembers things from our past as with certain memories he will get super geek ed up happy but those moments are growing few and far between now as he depends on Muscle relaxers and Volume to control some of the pain brought on by this nasty disease and its many pains including muscle spasms that tremble thru his tiny little 6 year old body now. The bucket list below may no longer be realistic but as soon as this cold weather breaks we are going to be once again all over before its any later than it already is now. it saddens me to say that the look in his eye's are becoming distant and I'm scared crapless less that one day soon my little boy may not respond or even hear or see me but this path he is on is one so horrific you wouldn't believe it with your own eyes and yet I wake up to and fall asleep to it watching the digression so if you have a idea for a memory you think every child should have then please don't just sit there watching doing nothing hoping for a good out come. The only out come we have is one of misery and we want to avoid that for as long as possible with so many minutes in the day. Folks have no idea how big of a help they can be by just sharing, liking, inviting friends to do the same and of course a true moment of your childhood experiences and what you remember and enjoyed as a child as far back as you can. Many others Have set up events to show him love and happiness and if you take a moment to look thru these pictures and video's you will see they succeeded with unbelievable success because their were no happier boys in the world on the days he was cheered on and giving more than just attention he was given peoples hearts and prayers from the bottoms of they're souls making each event beyond words but if i had to pick it would be magical for sure because I have never seen so much love in my life time.

I hope you choose to be a part of this road because together it doesn't have to be so hard. https://www.facebook.com/groups/985297474893403/

The name of the disease causing us all this pain is
Metavhromatic Leukodystrophy.

Metachromatic Leukodystrophy (MLD) is a rare, genetic, degenerative, neurometabolic disorder that affects approximately one in 40,000 people (primarily children) worldwide. It is an inherited disease, but parents are typically not affected. At present, it is a disease for which there is no cure.


Family Friends Acquaintances Please show your support by letting every one know so they to may choose to be a part of this amazing little mans life. Together we can make this go Viral over night. Please help by simply inviting friends to come join the page, sharing the link and just keeping us in your preys at night.

Hayden Bentley Brown
6 YEARS OLD
Birthday is 6-9-10
Wears 5t-6t
Favorite color is blue
Lives with Dad at Jonathan Brown
309 East St.Louis Ave East Alton IL 62024
Has a Full time Partner 3 year old Sister that will be with us at any and every event [so don't forget about her during planning plz]

Please be sure to share
https://www.facebook.com/groups/985297474893403

This Fund me page is for memory use, legal and medical cost not covered. 
As you see we have a lot to do and have done it this whole time with no financial help by working on motor vehicles in the drive way or selling my belongings including cars and have always been completely against every aspect of donations after seeing so many people take advantage of folks and spend the "peoples" tax dollarson drugs etc. This not the case we ask that you join us in his adventures by sending a request where you will see your money at work making a smile that has no financial Value. 
Thank you all so much just for visiting and please remember you can add to his bucket list and we encourage you too.