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

 

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Feb. Update

We've survived the cold, enjoyed the snow, and now looking forward to warmer weather hopefully soon!  Peyton misses riding his bike! (kinda)
He continues to do fairly well, all things considered.  He still works out at the YMCA and at home, and enjoys cooking at the "restaurant" at his school.  Seizures continue to be a problem, and we constantly have to change medications to try and control them.  He did have to have a feeding tube installed 2 months ago, and he was obviously not happy about that, it was hard on all of us.  But, he can still eat and enjoy meals with us, it's just much easier now to supplement his diet to gain some weight, and keep him hydrated.

Kayla continues to do well, and is getting all A's and B's in school!  She's still singing in a couple choirs, and just got her first job as a food server at the Manor!  She's very excited, and can't wait to start spending $$.
Jonah is still playing basketball, and now baseball at the same time.  He and a few kids at school started their own club:  Rubik's Cube Club.  Classic.

Good News - The Clinical Trial for Cyclodextrin should be nearing the end soon, as we now have 47 of the 51 patients we need enrolled.  We have a few more "in the works", so hopefully we can finish the trial soon, and start the process of getting this drug approved!!  Please keep praying for this success!

And, this is the time of the year again for the Polar Plunge for Special Olympics.  The picture below is of Peyton participating in Bocce a few years ago.  Please consider donating to this great cause for all the Special Olympic athletes!  In full disclosure, Bryan won't be able to jump this year.  However, if we reach his goal of $250, he will do the "ice bucket challenge" on a cold rainy day and post in online.  It's for the kids.  :-)
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Thank you as always for all of your prayers and well wishes, we could not do this without all of your support!
Bryan and Laura
www.hadleyhope.com




 


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