Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease


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February Update

Well, where to begin in our monthly update?  Let’s start with the important stuff – the kids.
We are still having some difficulty controlling Peyton’s seizures, however we are getting “better”.  We finally had to switch medications a couple weeks ago, and are now dosing up with the new drug, while weaning off the old one.  This has seemed to work, and is controlling the partial seizures much better.  However, we did have another “big one” last weekend.  We need to wait another week or two to get up to the full dose to find out if this new drug will work for sure.  This has been very stressful for us, but we are committed to getting Peyton back to school as much as possible, and give him “normalcy”.  He is a trooper, and immerses himself in books and baseball on times he can’t go to school.   We would also like to thank Suzie, Natalie and Helen for offering to come in and “shadow” him at school, what a blessing that has been, THANK YOU!
Kayla only has 2 more weeks in her clinical trial (YAH!), and we go back in mid March for the final blood draw.  No news yet on how effective the drug is in helping protect the neurons, but we’ll know soon.  At least now we will be able to get her on it full time!
Jonah is playing 1st grade basketball, and really enjoys it, even though they get beat each week by 20+.  This must be due to the poor coaching those kids receive…. ;-)
We had our Casino Night Fundraiser last month, and what a great success!  Thank you Nick and Stephanie Heuertz for heading this up, and to all of the sponsors and donors as well!!  We raised a lot of money for research, and everyone had a great time, thank you especially to everyone that showed up in support!!!  We’ve had a lot of requests to do that one again, so we’ll see.  We’re thinking maybe we should do one somewhere else.  Salem perhaps?  Stay tuned…….
Finally, our parent-researcher group (SOAR) is meeting next month to discuss ways to speed up clinical research, and get potentially beneficial compounds/drugs into our kids faster, so we can slow the progress of the disease.  This is what we work on daily: speeding research so that we can responsibly and ethically improve the quality of the NPC kids lives’.   We thank all of your for helping us in this mission!
Knowing is not enough; we must apply.
Willing is not enough; we must do.
Bryan and Laura Hadley



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