{"id":3153,"date":"2026-06-15T23:34:42","date_gmt":"2026-06-15T23:34:42","guid":{"rendered":"https:\/\/raleighmovingnews.com\/?p=3153"},"modified":"2026-06-15T23:34:42","modified_gmt":"2026-06-15T23:34:42","slug":"carrboro-teen-with-rare-genetic-disorder-receives-newly-approved-drug","status":"publish","type":"post","link":"https:\/\/raleighmovingnews.com\/?p=3153","title":{"rendered":"Carrboro teen with rare genetic disorder receives newly-approved drug"},"content":{"rendered":"
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CARRBORO, N.C. (WNCN) \u2014 A Carrboro teenager with a rare genetic disorder recently received a newly-approved drug to treat the condition.<\/p>

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In early March, CBS 17 shared the story of Cole Mausolf, who has Hunter syndrome. The genetic disorder, also known as MPS II, is a progressive disease affecting the body and brain. It can cause children to lose their skills and abilities, often leading to death in teenage years.<\/p>\n

At the time, Cole\u2019s doctor, Joseph Muenzer, a pediatric geneticist with UNC Health and the head of the Muenzer MPS Research and Treatment Center, was waiting to find out if the FDA would approve a drug he\u2019d been studying. The enzyme-replacement therapy crosses the blood-brain barrier to treat the disease in both the body and brain, and Dr. Muenzer said it showed promising results in clinical trials.<\/p>\n

Several weeks later, the FDA approved that drug, which is now called Avlayah.<\/p>\n

Recently, Cole received his first dose of the drug. It\u2019s a day that Cole\u2019s mom, Kim Stephens once feared would never come.<\/p>\n

\n
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\"In<\/figure>\n
Cole Mausolf<\/figcaption><\/figure><\/div>\n

\u201cI never thought we would get here with Cole being almost 16 years old,\u201d she said. \u201cYou keep hoping, but I always knew the time was ticking in the background.\u201d<\/p>\n

While Cole has already lost the ability to speak and focus, Stephens is hopeful that the drug will keep him stable.<\/p>\n

Stephens, who is the executive director of the Muenzer Center, stood with Dr. Muenzer to push the button that would give Cole his first infusion of the therapy, designed to replace an enzyme that children with Hunter Syndrome are missing.<\/p>\n

\u201cIt was just amazing,\u201d Stephens said about that moment. \u201cIt was this sort of weight that was coming off my shoulders because we had been fighting for this so long.\u201d<\/p>\n

After two doses, Stephens says she\u2019s seeing a difference in Cole\u2019s ability to focus. Instead of watching a show for 10-15 seconds, he\u2019s been paying attention for much longer, including watching an episode of \u201cCurious George\u201d for 11 minutes.<\/p>

Read more Military backgrounds released for 3 Fort Bragg soldiers killed in Wake County crash<\/a><\/p>\n

\u201cNot even two minutes, three minutes \u2014 \u00a011 minutes,\u201d she said.<\/p>\n

Stephens thinks Cole could also be using moments in his favorite shows to try to communicate. When she left her hair curly instead of wearing it straight like she usually does, she said Cole came to her with one of his favorite episodes of \u201cDora the Explorer\u201d\u00a0.<\/p>\n

\u201cThe giant on \u201cDora\u201d goes to the barber and gets her hair cut,\u201d Stephens said. \u201cHe came over, sat down beside me, and went to the part at the barber shop. The giant says, \u2018Oh, I love my curly hair.\u2019 He kept bringing it back to that one. Was he trying to communicate with me through this?\u201d<\/p>\n

\u201cEvery parent wants to be able to communicate with their child,\u201d she continued. \u201cIt\u2019s the biggest blessing.\u201d<\/p>\n

While Stephens can\u2019t say for sure whether these changes are a direct result of the drug, she feels strongly that they are.<\/p>

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\n\n\t\t\t\n\t\t\tCarrboro teen with rare genetic disorder gets new drug\n\t\t\t\t\t\t\t\t\t\t\n<\/h3>\n\n\n<\/svg>\n<\/span>\n<\/span>\n<\/div>\n<\/article>\n
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\u201cI probably can\u2019t say for sure,\u201d she said. \u201cIn my heart it is. I think it is. It\u2019s never happened before. Cole hasn\u2019t talked in seven years. He hasn\u2019t done that before. He hasn\u2019t had that attention span.\u201d<\/p>\n

While it\u2019s not yet clear how the drug will affect Cole in the long term, Stephens is grateful for every second they have together.<\/p>\n

\u201cI know that all this time with him going forward is a gift,\u201d she said. \u201cI don\u2019t want to miss a bit of it.\u201d<\/p>

Read more Fire heavily damages townhomes in northwest Raleigh<\/a><\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

A Carrboro teenager with a rare genetic disorder recently received a newly-approved drug to treat the condition.<\/p>\n","protected":false},"author":1,"featured_media":3151,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-3153","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"yoast_head":"\nCarrboro teen with rare genetic disorder receives newly-approved drug - Raleigh Moving News<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/raleighmovingnews.com\/?p=3153\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Carrboro teen with rare genetic disorder receives newly-approved drug - Raleigh Moving News\" \/>\n<meta property=\"og:description\" content=\"A Carrboro teenager with a rare genetic disorder recently received a newly-approved drug to treat the condition.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/raleighmovingnews.com\/?p=3153\" \/>\n<meta property=\"og:site_name\" content=\"Raleigh Moving News\" \/>\n<meta property=\"article:published_time\" content=\"2026-06-15T23:34:42+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/raleighmovingnews.com\/wp-content\/uploads\/2026\/06\/aea4bdf42cebf8869fde025ea9fc4fe2.webp\" \/>\n\t<meta property=\"og:image:width\" content=\"1842\" \/>\n\t<meta property=\"og:image:height\" content=\"906\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/webp\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=3153#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=3153\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/#\\\/schema\\\/person\\\/eda87157c0d9ccdbb002a999547a6a60\"},\"headline\":\"Carrboro teen with rare genetic disorder receives newly-approved drug\",\"datePublished\":\"2026-06-15T23:34:42+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=3153\"},\"wordCount\":670,\"commentCount\":0,\"image\":{\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=3153#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/raleighmovingnews.com\\\/wp-content\\\/uploads\\\/2026\\\/06\\\/75e9707aa67784907aa06e288c4002c6.webp\",\"articleSection\":[\"News\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/raleighmovingnews.com\\\/?p=3153#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=3153\",\"url\":\"https:\\\/\\\/raleighmovingnews.com\\\/?p=3153\",\"name\":\"Carrboro teen with rare genetic disorder receives newly-approved drug - 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