Byron Anthony Hare
I can do all things through Christ who strengthens me. Phil 4:13
Byron is the son of Trey and Traci Pratt born on April 8, and is a wonderful big brother to his sister, Megan Sisco. Byron has unknowingly been harboring this disease since birth. Juvenile Huntington’s disease, or JHD, is an inherited disease that causes the progressive degeneration of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and results in dementia, limited movement, cognitive and psychiatric disorders and is ultimately fatal.
Byron’s symptoms began at the age of 5 (now 18 yrs old) with some minor ‘ticks’ such as blinking, sniffing and clearing of his throat. But other than those little ‘ticks’, Byron was a perfectly normal, happy child. He had complete mobility, played football, soccer and rode his horse daily. Though the symptoms began on a very small scale, at about 13 years of age Byrons movement seem to be noticeably slower and more rigid. And, as time went on, he began to lose focus on the smallest of tasks and having bouts of depression. Byron has ALWAYS been a very well behaved child. He has never caused any trouble, but he began to have these fits of emotion, not rage or anger, just outbursts of tears and frustration. Amidst all of this, he also seem to be losing his ability to problem solve. Today, Byron has difficulty with balance, decreased mobility (rigid/mechanical in movement), speaking and he is having some dementia. The symptoms will progress and he will ultimately be unable to perform simple every day tasks, including his ability to talk, walk and care for himself.
July 21, 2018 Update Byron no longer being able to speak and him not being able to tell me what he needs is one of the cruelest and frustrating parts of this Stupid frickin thing I HATE IT 😭😭
November 1, 2018 I used to watch Byron run, play, ride... I watched him becoming a true gentlemen as he entered his teenage years. He always said “Ma’am,” “Sir,” “Please,” and “Thank you.” I watched him help feed a special needs kid that couldn’t feed himself. I watched him JUMP to help anyone in need, be it an elderly person or a friend. He was becoming an AMAZING young man....now I watch him struggle day in and day out. I’ve watched him go from 130lbs to now about 110lbs if he’s lucky. I watch his body betray him every minute of every single day. I see the tears well up in his eyes when he can’t communicate his need/want. I see his mind slipping away from him. I cry and I cry as I pray for relief for him, which doesn’t come. I can’t imagine the prison he is in. I can’t imagine the war between his mind and his body. He’s trapped in there and I hate it. I get it... there’s a big plan here. But he’s declining more and more and it’s just so damn hard to watch! I JUST WISH HE COULD HAVE SOME RELIEF!!! Please lift Byron up in prayer. It’s so hard because we know that tomorrow will not be better. Things will only continue to get worse and we are nearing the point that I have feared for the last 7 years. Please just pray for him to be pain free for the remainder of his fight, no matter how long it may be (because no one knows how long that will be, but God)
May 22, 2019 I’m calling hospice in for Byron. For those of you who didn’t know, Byron is now completely immobile and has been for a bit. We are struggling to get enough nutrition in him and things are just declining. Hospice is a very scary word. I’ll admit that... I’ll even admit that I cried before making the call. But I don’t want anyone to panic or think that this means “End of Life Care.” im trying to think of it as “Quality of Life Care.” For us it just means not having to try and load him in the truck to get care (this is extremely difficult to do bc his body is tightening up everywhere) and so it’s like trying to put a 5 foot 11 stiff 115 pound 2x4 in the truck. They will send doctors and nurses to the house. They will also be able to give him the right concoction that will let his body rest as the Myoclonus (jerking and tightening of limbs) is non stop and he never gets to rest. They can also manage his pain. Hospice will start next week. I had to take him to the ER last night again. He’s ok but there is some infection (bladder/kidney) and he is on antibiotics again. He will go to the urologist next week as well to try to find out why this keeps sneaking up on us. But hospice will make things easier on Byron as they are masters at helping people stay more comfortable. I’m asking for prayers for Byron. We have not given up on miraculous healing... and we pray for Gods Will daily. But the main thing is that we do NOT want him hurting all the time the way that he is. Thank you all for your support. It means so much to me. I know I’ve been the focus of many of your prayers for so long and it’s so appreciated. I’ve never seen an outpouring of love like this...
God bless each and every one of you. Please know I read every single comment even if I miss the like or love button. But I love y’all so much for your encouragement and love.
There is currently no cure and no medications that will successfully slow the disease down. Average life expectancy for JHD is 10 – 15 years from onset of symptoms. We are now organizing some benefit efforts to assist in Byron’s medical bills and care. We are currently holding two separate fundraising efforts. Firstly, we are having an online Stallion Breeding Auction. This auction will consist of some of the top barrel racing sires in the industry!
Very witty…loves to laugh. Loves to joke And very positive
Youth World Barrel Race….NFR Trip to Vegas ….Meeting Rodney Atkins….His graduation day….
Horses are definitely his favorite and his dog Arlis….and maybe the favorite memory being….um….the Youth World Barrel race because he got to carry the US flag during the national anthem.. His Favorite Color Is Blue.
Byron’s passion is riding, he loves horses, even though he’s sick he’s not letting it stop him from doing what he loves!!
Contact Traci (his mom) at firstname.lastname@example.org
I’ve been seeing a series of 1’s everywhere… on the clock, on signs….and its always three ones….took me forever but I finally got it…it was a sign all along….on a silent prayer that I’ve been making every night….and the 1’s??? Well…it was a scripture revealing my answer ♥ Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen.