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

 

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September Update

Dear Hadley Hope Friends and Supporters,

 

It’s back to school time, and the kids are definitely growing up!  Peyton has just started High School at South Medford High.  He is very excited about being a freshman, but is adjusting to a completely different environment.  He is now in a school of 2,000 students, compared to about 300 at Sacred Heart (K-8).  We were fortunate that he is able to attend South, where he is enrolled in a new “extended diploma” program and will be in a class of about 15 other students with similar disabilities.  He will receive individual assistance in the classroom, and will also be able to see his old friends at the “Sacred Heart” table at lunch time.  So far he is enjoying his new school.

 

Kayla is now in 6th grade, and is on the volleyball team.  She is VERY excited to be in middle school, except for the huge increase in homework!  Jonah just celebrated his 9th birthday, and is in third grade.  He wrote that if he could have one wish, it would be for “my brother and sister to not be sick”. 

 

The infusion schedule for the kids is on our website for Sept. and Oct., so if you can stop by, it always brightens their day!  We are now going to be doing 6 infusions per month.  2 per week seemed too many, and 1 per week wasn’t enough, so we’re settling on 6 per month.  All a guessing game, but the doctors at their “annual exam” all agree that they do not see many signs of deterioration in either of them.  This is very good news, and hopefully all the time in the hospital with Cyclodextrin infusions are paying off!


We did receive a minor setback however.  For the last 4 months, (in addition to the IV Infusions) we have been trying to seek approval for Cyclodextrin to be administered directly into the CSF, via an injection near their spinal cords.  This would deliver the cyclo to the brain where the cholesterol build up does the most damage.  However, our local Rogue Valley Pharmacy has just told us they are not comfortable in the preparation of the cyclo, and so have refused to make it for us.  Even though Children’s Hospital Oakland has been doing this with 2 other NPC girls there for the last year and a half.  The Hospital in Reno is also doing it, and 3 others worldwide.  So, we have contacted the Dr. in Oakland, and she has agreed to treat our kids as well.  Details and approvals still need to be worked out, but it is looking like we will now have to travel to Oakland every 2 weeks to get treatments.  Inconvenient, but definitely necessary. 

 

Thank you everyone for your continued thoughts and prayers!  Hope everyone had a wonderful summer.

 

Bryan and Laura

www.hadleyhope.com





 


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