19 year old Angel
Brandon was born March 9, 1993 and came to live with us in April of 1996. We adopted him on December 30, 1997. Brandon was a bright, happy little boy that we enjoyed and grew to love with all our heart.
Although Brandon scored very high in his pre-screening for kindergarten, his teacher noted that Brandon didn’t seem to “settle in” as most children did within a few months. Thus, we started a four year trip to doctors and specialist to determine the cause of various problems. During the latter part of second grade, I notice his speech was beginning to slur as well as a decline in his school work. Different diagnoses were discussed including detachment disorder, ADHD, oppositional defiant disorder, etc. but no definite diagnoses. In January of 2003 we took him to a neurologist who, after reading Brandon’s school charts, assessments and tests, immediately suggested Juvenile Huntington’s and thought we should have him tested. In May 2003 he tested positive with a CAG of 78.
The years following diagnoses saw a steady progression of the disease. Brandon declined mentally, physically and cognitively.
Brandon became a JHD angel and left behind family and friends who will forever keep him in their hearts. March 9, 1993-August 30, 2012.
Love and Miss You Bud!! XXOO
Brandon was an inspiration to those who knew him, never complaining or feeling sorry for himself. He touched many lives with his sense of humor, loving heart and his big, ever-ready smile.
Being an uncle to his five nephews was a source of great pride to Brandon and he treasured spending time with them. He had a deep faith and going to church and being the official “hugger” was important to him. Brandon enjoyed his time at school interacting with peers and formed a special bond with the teaching and therapy staff.
Until JHD rendered it impossible, he enjoyed video games, computer, Star Wars movies, Hot Wheels cars, fishing with Dad and being the great ice cream connoisseur.
JHD- An insight by an older sister Brandon’s Sister Lori
I have been thinking about writing this for awhile, and with Brandon’s 21st birthday coming up, I thought it is time to do this. Not many realize the trials and difficulties that JHD (Juvenile Huntingtons Disease) causes. While I will not give all of the events that happened and have the timeline exact, this is a look at some of what JHD did to my little brother.
Growing up I always wanted a little brother, but that was not in my parents plan. They had us two girls, and were happy. God had other plans for them, as he knew their kind, compassionate heart. When I was 16, my parents became foster parents. They had several foster kids in and out, but two of them became a permanent part of our lives. I now have two little brothers. My brother, Jeremy, was their first foster child, and he is still a part of the family. Then when I was 20, my brother Brandon came to live with my parents. He was only 3 at the time. I was amazed at how much he looked like our family. He was so cute, smart and sweet. But he had some issues. My parents had difficulties getting him to use the bathroom for bowel movements, and he would pinch or bite when he didn’t get his way. It took awhile for them to correct this behavior. In April of 1997, I moved away, and they adopted him later that year. For three years, I did not see him much. In this time, I got married and had a son. We moved to Wisconsin in 2000.
He adored his nephews; he ended up with 5 of them, no nieces. Brandon was an excellent reader and a wiz at the computer. He started having some issues in grade school. His school work was starting to decline as well as behavior and some motor skills. They tried to diagnose him with things such as ADHD. My parents had people giving them all kinds of opinions on what to feed him, and the alternative “vitamins” to give him. We knew his sperm donor (aka biological dad) had Huntingtons Disease (HD), and that he was a young adult when it onset for him. My parents chose not to have Brandon tested before the adoption as HD onsets in adulthood. Juvenile Huntingtons Disease, which onsets before the age of 20, is very rare. In 2003, when Brandon was just ten, the symptoms were there. So he was tested, and tested positive.
Life changed. As my oldest son was learning how to tie his shoes, Brandon was losing the ability to do it. I remember taking Brandon bowling with us, and Hunter, our son, proudly tied his shoes and kind of threw the bowling ball down the alley on his own. Brandon couldn’t, he needed help.
Brandon would have violent outbursts. I had to teach my kids not to fight with Brandon, and when he started to get upset to go into another room and lock the door until Brandon would calm down. My kids were around 3-8 years old. Brandon would hit, kick, scratch, and scream words that wouldn’t usually come out of his mouth. I don’t know how else to describe it, except that it was like he was possessed by a demon. But the demon was JHD. I remember a couple of times I basically took him to the floor and held onto him until he calmed. Once he calmed down, he would be the sweet boy again. My boys loved being at grandma’s house and loved Uncle Brandon, but we did limit their time. Brandon’s behavior got so bad at one point that my parents needed help, and the only way to get it was to get the state involved. Brandon ended up at a mental health facility. The main purpose was to find some medications that would help with the symptoms, but there is not a cure. Between his behavior, his loss of physical abilities and his sexual impulsivity his medications constantly needed to be adjusted.
Brandon’s abilities really began to decline in his high school years. He started needing support when walking, getting dressed-with all of his activities of daily living. His behavior got better as he did not have as much strength and coordination. Hunter was often found helping Brandon walk around the house. He was always by Brandon’s side. Even when we told him it is probably not safe with Brandon’s unsteadiness, he wanted to help him. I believe 2009 Brandon had some episodes where it seemed like he was having seizures, though they were not diagnosed as such. It was scary. He ended up in the hospital for awhile until once again they could get his medications right.
Brandon had harsh movements known as myclonic jerks, as well as stiffness, dystonia and rigidity, which all are normal with JHD. I am not sure how many times he broke his wheelchair. The different inventions my mom and Brandon’s therapists came up with so he would not get hurt when he had his movements were many. He also needed to have a weighted blanket at night.
Brandon had a feeding tube put in as he was starting to have a hard time swallowing. Whenever Hunter was there, Brandon insisted Hunter feed him. The first few times I took care of Brandon, Hunter had to show me how to do it. Hunter was around 10 at the time. Not something you want your child to know how to do at that age, but he is a helper. Later, Ian my youngest also learned how to help with his feedings.
Speech is another issue. Brandon got harder and harder to understand. He did get some of those fancy computers where he just had to push a button or two and have it talk for him. Not exactly how a parent or sibling wants to communicate to their once spunky, healthy child or sibling. But it got harder for him to even use the gadgets. It ended up being a lot of thumbs up or thumbs down.
Before the surgery, Brandon was uncomfortable, and had so many movements. The doctors recommended to try Baclofen pump in his abdomen with a tube to drip the medicine into his brain to help with his movements. The surgery gave us some hope for Brandon’s time left to be more comfortable. That was not so. February 10, 2012, the surgery went ok, but his coming out of the anesthesia didn’t. We almost lost Brandon during this time. It was touch and go for a long time. He ended up with Neuroleptic Malignant Syndrome, high fevers, and pneumonia a couple of times. He was put on life support (ventilator) and taken off and put back on. Brandon never fully recovered. We know that he was not well before, and that his terminal illness was not going to be cured. But this was different. I have been following some recent brain injury recoveries. I believe he had brain damage from the surgery or his fevers above and beyond JHD. Brandon’s last few months were horrific as if what he had been through already wasn’t.
When Brandon finally came home, there were brief moments where Brandon showed us moments of himself. It wasn’t long after that mom contacted a JHD specialist about Brandon’s situation. Her response was not a surprise. She recommended visiting a palliative care doctor as she believed Brandon was getting towards the end of his life. This hit hard. Again, you know, but you don’t want to believe it. During the palliative care appointment, the doctor started talked about removing his feedings. My parents did not like this idea. Hospice care was then started. Brandon’s fevers were constant. It was a constant struggle to keep them down. His pain medications were plenty. Sucking out his saliva was endless so he wouldn’t choke. Sleep for my parents was little. It continued to get worse. It was time to make the difficult decision. Brandon was removed from his feedings. Watching your little brother in pain and sadness, and seeing the pain and sadness in your parents’ and children’s eyes is so hard. There were many times that we thought Brandon had given up and went to Jesus, and then he would start breathing again. On August 30, 2012 Brandon went to go be with Jesus.
Brandon always loved God and had his Faith. Church seemed to be his favorite place. He was the church hugger. Brandon is now walking, dancing and singing. He is able to do the things that were taken away from him at a young age here on earth. But he is doing all of this with Jesus. He is no longer in pain.
Yes, he was adopted, but don’t think he was loved differently or less because of it. I can tell you, it hurts no differently. Miss you little bro!
Brandon wanted to be a storm chaser since he was about 7. He used to watch the weather channel for hours. He also loved riding in fire trucks. There had been talk once of him getting to go out to spot storms with the firemen in a truck. It never materialized. I wish he would have had the opportunity.