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


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Nov. 2014 Update

Dear Hadley Hope Friends & Family,

Since you have all been a very close part of what is going on with our kids medically as well as with the foundation, we thought it was important to let you know of Peytons upcoming surgery.  I along with Diane & IRB have been working hard to jump through numerous hoops, (along with gobs of amendments and supporting documentation) to meet the FDAs requirements to remove the partial clinical hold associated with an implanted intrathecal port for Peyton, from October 2013.

We just received FDA approval and IRB approval (yes!!) to proceed forward with the implanted intrathecal port for Peyton!  We are excited about the opportunity it will allow for doctors to treat him less invasively, and hopeful all our work will help others awaiting similar options, including Kayla.

The port will be surgically placed in the intrathecal space where the lumbar punctures are normally done, and then tubing will wrap around to the side of his rib cage with a smart port, allowing for easy access for injections of cyclodextrin.  This will alleviate his sedations which keep us in the hospital for two to three hours in excess of Kaylas unsedated LPs every two weeks.  It will also not continue the scar tissue beginning to form after 63+ LPs as well as the debilitating side effects of sedation which he has endured for almost three years of treatments.

Bryan and Peyton head up to OHSU on Thursday, November 6th.  He will undergo surgery under Pediatric Neurosurgeon, Dr. Lissa Baird and both Dr.s Ellen Plummer & Diane Williams will attend to learn how to prepare and access the port for future treatments.  We ask that you please join us in praying for a smooth surgery and recovery.

We greatly appreciate all who have served on our board over the years, our incredible team of physicians, our many supporters and sponsors who financially and prayerfully support our family and cause, those who attend our fundraising events, and keep in contact with us.  We are truly blessed to know so many good and compassionate people.  For the last seven years we have struggled for treatments and various delivery methods/devices, and in the last four years, Peyton and Kayla have received treatments which we know already is helping more than four dozen NPC patients worldwide.  Thank you for helping to make this a reality and one of great hope!


Laura & Bryan


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