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

 

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May 2015 Hadley Hope Update

Wow.  Already May of 2015.  Seriously, where does the time go?
 
Jonah just had his middle school orientation for next year.  Kayla is finishing her freshman year in high school, is practicing daily in the theatre production Anything Goes, and will be confirmed at Sacred Heart Church on May 17th at 7 p.m.  And Peyton…..He GRADUATES on June 6th from South Medford High School !
 
We are so proud of our kids, as all parents are, but for Peyton it is almost overwhelming how proud we are for him, and his accomplishments.  Despite his disabilities, he works determined every day in school to learn and make himself better.  We learned this week in an IEP meeting, he will not just graduate with an “extended diploma”, but has earned the next level up, the “modified diploma”.  He’s accomplished this through his own desire to learn and hard work ethic.  He has made such an impression on all of the teachers, students, and staff, that he will leave this school having changed lives.  His positive attitude and cheerfulness with everyone he meets is moving and contagious.  As it’s been said:  “It is impossible to have a bad day after meeting up with Peyton.”  A friend and fellow graduating senior even decided this past month to selflessly volunteer in his classroom so he could spend more time with him!
 
It’s been 8 years since Peyton and Kayla were diagnosed with Niemann Pick Disease, and we were told they would not live to see their 18th birthday.  Peyton turns 18 on August 3rd, and he is still walking, talking, and teaching us all a thing or two about life.  (It’s not easy living with a Saint!)  Kayla will be 15 in July, and is still not showing many signs of the disease.
 
Since 2007 the Hadley Hope Fund has raised over $400,000 to go toward research for a cure for NPC disease.  We have asked for your donations, prayers, and support, and the response has been an amazing testament to your faith and belief in advancing research for our kids and others.  Peyton and Kayla have been blessed to be on an experimental drug for almost 5 years now; one that we know has slowed the progress of the disease and given us more time with them.  While we can’t call it a “cure” yet, we certainly believe that it’s nothing short of a miracle that we’ve been able to receive the treatment that did not even exist when first diagnosed.  There is still so much work to be done, but we all should be proud of how far we have come.
 
Thank you so much from all of us!
 
Time is short, and nothing is a given in life.  We will repeat what we said when we first were diagnosed:  Hug your kids, tell those around you that you love them, and enjoy each and every day!
 
Blessings,
 
Bryan and Laura
www.hadleyhope.com



 


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