We were told there was nothing to do but go home and love our children, and enjoy the time we had left.\u00a0 Most of you know the rest of the story:\u00a0 That lasted only a few days before we decided to start a foundation and raise money for research to find a cure.\u00a0 Then, thanks to our generous supporters, and those of many other Niemann Pick Type C families, and by a true miracle: only a couple years later our kids were able to be a few of the first to receive a new experimental drug.\u00a0 And now that drug in finishing clinical trial, and hopefully be FDA approved within the next year.\u00a0 Our mission has always been to make sure ALL the NPC patients had access to the drug, and that dream is slowly becoming a reality.<\/p>\n
The drug has been shown to significantly slow the progress of the disease, but unfortunately the drug is not the miracle cure we still need.\u00a0 We are reminded of this as Peyton continues to struggle with walking, talking, eating, and of course his seizures.\u00a0 We won\u2019t lie, it\u2019s been a rough year.\u00a0 We are also reminded almost each month, as we get another notification that an NPC patient has passed away.\u00a0 It seems this year has been harder, but perhaps because we knew so many of the children that passed this year.<\/p>\n
But, as the holiday season approaches it reminds us of what we are thankful for.\u00a0 We are thankful that Peyton IS still able to do all of those things, even if a little less.\u00a0 We are thankful that Kayla is still doing well, except for some hearing loss most likely caused by the new drug, Cyclodextrin.\u00a0 We are hopeful that the next \u201ccure\u201d to come could be in the form of Gene Therapy, which we are developing right now.\u00a0 And, of course we are most thankful to our friends\/family\/supports that still reach out daily and ask about the kids.<\/p>\n
So, we carry on.\u00a0 We will continue to try and find a solution to the hearing loss problem in Cyclodextrin.\u00a0 We will continue to support the Gene Therapy research.\u00a0 And, we will continue to investigate any new compounds that show promise in helping slow\/stop NPC disease.<\/p>\n
And, we will continue to love our children, and enjoy the time we have with them.\u00a0 A long, long time\u2026..<\/p>\nBlessings to All! Hadley Hope 10 Year Update 10 Years. It was 10 years ago last week that we heard the words that forever changed our family\u2019s lives.\u00a0 We can\u2019t recall everything that was said, but certain words and phrases stand out:\u00a0 extremely Rare Disease, Degenerative, Terminal, there is no cure.\u00a0 And the bombshell:\u00a0 and your daughter has…<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"_links":{"self":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages\/143"}],"collection":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/comments?post=143"}],"version-history":[{"count":0,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages\/143\/revisions"}],"wp:attachment":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/media?parent=143"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\nBryan and Laura
\nwww.hadleyhope.com<\/a>\n","protected":false},"excerpt":{"rendered":"