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

 

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Feb. 2018 Update

We try hard to make each update as positive and hopeful as possible, as that is how we choose to view life.  But, occasionally we do need to acknowledge our difficulties and ask for the prayers/support of our family and friends to get us by.  Now is one of those times.
 
Ironically, of all of the difficulties Peyton faces, there is one that is most problematic, yet seems the most simple:  Lack of Sleep.  On top of the symptoms caused by Niemann Pick Disease, he also has struggled with sleep apnea.  As many of you know, it is a terrible problem, as lack of sleep affects your ability to function during the day.  Lack of sleep only exacerbates his current problems: slow speech, unstable gait, swallowing, seizures.  Seizures being the worst.  Last summer he had to be intubated and  life-flighted to OHSU because of uncontrollable seizures.  It has been difficult to control them since, and just last week he had a seizure in the middle of the night and fell and broke his arm :-(
 
As most of you know, we have tried EVERYTHING to alleviate the sleep apnea.  CPAP, oral devices, specialized pillows, and even the extreme measure of having a mandibular advancement surgery, which DID cure the apnea for 2 WONDERFUL years, but now it is back with a vengeance….So now we are told there is one more option: an INSPIRE device that can be surgically installed to stimulate the back of the throat to keep the airway open at night.  (for those on CPAP, look into this, it is intriguing as there are over 2,000 patients with positive results).  BUT, when the FDA approved the device, they only approved it for those 22 years or older.  Peyton is 20 (and a half).   So, insurance is denying it.  We have an appeal in process and this is where you come in:  PRAY that Peyton can get this approved, so that his sleep and quality of life can be improved.  It is so very apparent the next day when Peyton gets a good night sleep:  he is much more engaged, less off balance, and his speech is much better.
 
On another note, it’s time for the Special Olympics Polar Plunge again.  While Peyton is currently not participating in special olympics, many of his classmates and friends are, and we are still hopeful he will again soon…….. .  It remains one of our favorite charities, we just wish they would change their fundraising idea from jumping into a freezing cold pool….but until then, Bryan will jump again this year next Saturday.  If you would like to donate/sponsor the jump, please log in to our fundraising site at:
https://hadleyhope.us2.list-manage.com/track/click?u=817da2d73d4064201e337cb01&id=c5396d818c&e=c0550eaa5f
 
Blessings to everyone, and thank you once again for everything.
Bryan and Laura



 


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