These things always happen to other families, right?
Well, what if it was your nightmare?
What if you learned that your child’s decline in school performance, behavioral problems, movement difficulties, and personality changes were signs of the onset of Juvenile Huntington’s Disease?
HD has often been called the cruelest disease in the world, but the course of JHD is certainly viler, more sinister, and more heartbreaking. JHD wreaks havoc on your child’s brain, deteriorating its caudate and putamen, globus pallidus, and cerebellum.
And so during the next decade, which will unwaveringly lead to your child’s death, his or her precious body will become more and more rigid. Your precious child will struggle through progressive dementia and swallowing problems. Your child might even have seizures.
“That’s OK,” you think, “mommy and daddy can make this all better.”
But this time you can’t.
This time, there is absolutely nothing you can do to save your precious child.
You can only use whatever medicines doctors have determined will make your child more comfortable.
This is the worst thing that can ever happen and it’s happening to your child, in your family.
Now try that on and wear it for a while, while I tell you about the Inaugural Help4JHD walk.
JHD is priority number one
Help4JHD.org is fully committed to funding and facilitating a cure for JHD. “It’s time to make our JHD kids priority number one. Its time to help our children and families who are suffering with Juvenile Huntington’s disease. Please join us to support JHD research. Please support this effort to eradicate JHD,” the president and vice-president of Help4JHD.org said in a statement on the organization’s website.
And they believe the quickest path to a cure is being laid by Dr. Jan Nolta’s Juvenile Huntington’s Disease Research Initiative.
In a December 2014 interview with Ivanhoe News, Dr. Nolta succinctly describes how stem cells can be used in gene silencing. The stem cells deliver “things that will shut down the mutant gene, but not the normal copy of the gene,” Dr. Nolta said. The desired result would be stopping the symptoms, then hopefully restoring function. She has a team that is just as committed to helping JHD kids as she is, and as soon as they come up with a safe, effective treatment, they will move forward, knowing that time is of the essence for all of these children.
Are you still pretending it’s happening to you? That’s an uncomfortable place to be, but here is some relief:
On June 13, beginning at 8:00 a.m. at McKinley Park, Sacramento, Help4JHD is holding its Inaugural JHD Walk, the net proceeds going to support the work of Dr. Jan Nolta. The ¾ mile walk will be followed by many activities including entertainment, vendor booths, lunch and a raffle.
Thirteen-year old Cameron Brown is the official honoree and Poster Child for the Juvenile Huntington’s Disease Walk. He is an appreciative and loving child. He might remind you of your child. You can read about Cameron here and here.
Below you’ll find links for registration and more specific info about the walk and Help4JHD.
If you live in or around Sacramento, this is a no-brainer. Phenomenal cause, great day, etc.
But if you’re an east-coaster, like me, or live on the Isle of Wight, like one of this blog’s followers, it is incumbent upon you to participate financially to the extent that you can.
That means go here and donate.
Why? Because you tried on what it feels like to have a child with JHD and you know that something needs to be done.
And this is that something.
Now for the details:
Donate to Help4JHD.org