{"id":445,"date":"2012-07-03T18:23:03","date_gmt":"2012-07-03T18:23:03","guid":{"rendered":"http:\/\/www.annetaylorfarrell.com\/?page_id=445"},"modified":"2026-06-25T19:48:51","modified_gmt":"2026-06-25T19:48:51","slug":"julies-story","status":"publish","type":"page","link":"https:\/\/sjsupport.org\/?page_id=445","title":{"rendered":"Our Story"},"content":{"rendered":"
\n

L’ambiance v\u00e9hicul\u00e9e par win unique casino<\/a> traduit un soin particulier dans l’organisation visuelle et fonctionnelle. L’ic\u00f4ne d’\u00e9pinglage \u00e0 l’\u00e9cran d’accueil simule l’usage d’une application d\u00e9di\u00e9e. Les missions hebdomadaires apportent une couche ludique suppl\u00e9mentaire qui pla\u00eet aux joueurs r\u00e9guliers. Les retours visuels confirment syst\u00e9matiquement les actions effectu\u00e9es par l’utilisateur. Les croupiers en direct m\u00e9morisent souvent les habitu\u00e9s et personnalisent leurs interventions. Les utilisateurs r\u00e9guliers profitent d’un niveau de traitement acc\u00e9l\u00e9r\u00e9 sur les retraits classiques. Un blog \u00e9ditorial alimente r\u00e9guli\u00e8rement des contenus p\u00e9dagogiques autour du jeu en ligne et des strat\u00e9gies. Les politiques de confidentialit\u00e9 respectent strictement le RGPD europ\u00e9en ainsi que les standards internationaux. Une plateforme \u00e0 observer dans la dur\u00e9e, qui pourrait bien s’imposer comme une r\u00e9f\u00e9rence durable.<\/p>\n<\/div>\n\n\n

Julie\u2019s Story<\/b><\/p>\n

In 1996, Jean McCawley founded the Stevens-Johnson Syndrome Foundation after her daughter, Julie, had SJS. Two years before starting the foundation, a 10-month-old, Julie, began to have grand mal seizures and was diagnosed with Pediatric Epilepsy and put on Phenobarbital. When Jean asked about the side effects, she was told the only one was drowsiness.<\/span><\/p>\n

\"Julie<\/p>\n

Shortly after starting the anti-convulsant, Julie developed puffy, red eyes and blisters in her ears. Jean rushed her to the pediatrician and was told she had conjunctivitis in both eyes and double ear infections. The pediatrician prescribed an antibiotic, told Jean everything would be fine within a few days and sent them on their way. Little did Jean know that Julie would get much worse. The next day, Julie developed a high fever and blistering rash and was again taken to the pediatrician, who said Julie had Chicken Pox and not to worry.<\/span><\/p>\n

Julie\u2019s condition only worsened as she stopped drinking bottles, as her mouth was blister-filled. Julie began dehydrating, and her fever persisted, so Jean brought her to the emergency room, where they started an IV and gave her her missed dose of Phenobarbital. Julie was admitted and continued to receive her Phenobarbital via IV, all while her blisters increased from the size of a pencil eraser to a dime and a half dollar size. As the days went on, Julie became unrecognizable, as if she had been dipped in a deep fryer.<\/span><\/p>\n

Four days later, on August 18, 1994, Julie was diagnosed with SJS. The diagnosis brought Jean hope and relief, as she believed Julie would soon get better. However, the hope was stolen when a doctor told her, \u201cJean, this is not a good thing.\u201d<\/span><\/p>\n

Jean\u2019s sisters went to the medical library and found the only information they had on SJS \u2014 one lone article. As Julie\u2019s SJS progressed into Toxic Epidermal Necrolysis (TEN), she began a grueling treatment: being debrided daily and wrapped in bandages, given morphine for the pain, and placed on a feeding tube for nutrition. Jean almost lost Julie several times during her hospitalization as her lungs collapsed. There was even a night when her entire family came up to the hospital to say goodbye to her.<\/span><\/p>\n

On Julie\u2019s first birthday, the doctors pried Julie\u2019s eyes open with a lid speculum and broke the news to Jean that Julie was going blind. She was told they would need to perform extensive procedures to save her vision, and not only watched in horror but had to hold Julie down as the doctors swept glass rods under her eyelids to burst the blisters.<\/span><\/p>\n

Jean never left Julie\u2019s side, and after 27 days of fighting for her life, Julie was released from the hospital. Jean was given one lesson on how to place Julie\u2019s feeding tube through her nose and into her stomach just before leaving the hospital. Julie was left with numerous side effects, including being blind in her right eye with low vision in her left, dry eye syndrome, photophobia and deafness.\u00a0<\/span><\/p>\n

As Julie\u2019s healing process began, Jean found out that blisters had ruptured in Julie\u2019s ears and hardened over her eardrums, making it impossible for her to hear. An ear, nose and throat doctor had to suction the blisters from Julie’s ears to restore her hearing.<\/span><\/p>\n

\u00a0<\/p>\n

Starting the Foundation<\/b><\/p>\n

As Julie recovered, Jean felt isolated in their experience with SJS, as the doctors told her it was so \u201crare\u201d that she would \u201cnever meet another person with it.\u201d However, Jean recalled that two other children were hospitalized with SJS at the same time as Julie and couldn\u2019t believe that it was as \u201crare\u201d as they said. A year after Julie\u2019s SJS, Jean created an SJS support group by connecting with another survivor\u2019s family who went to the same pediatrician.\u00a0<\/span><\/p>\n

Over the first year, the SJS support group slowly grew, and Jean recognized the need for a foundation to provide information and support on SJS. In 1996, Jean filed the paperwork for the first non-profit SJS Foundation, the Julie Foundation for Allergic Drug Reactions. She developed the first version of the SJS Foundation site as an AOL homepage and chatroom, and messages from around the world began to flood in.<\/span><\/p>\n

Jean was on a mission to ensure no one would have to search for information while their loved one was fighting to survive SJS. She compiled all the information she could about SJS into packets to mail to those with SJS and their families. Then, she developed a newsletter featuring informational articles and resources, and spotlighting SJS families to raise awareness and foster connection within the SJS community. Jean\u2019s cousin volunteered to help create an SJS fact sheet<\/a>, which has since been distributed to hundreds of thousands of families, medical facilities and pharmacies worldwide.<\/span><\/p>\n

\u00a0<\/p>\n

Spreading SJS Awareness<\/b><\/p>\n

In 1997, Jean changed the name to the Stevens-Johnson Syndrome Foundation to make it easier for those seeking information on SJS and TEN to find. As the foundation grew, Jean decided it was time there was an SJS awareness ribbon and month. Given that Julie had inspired Jean to found the foundation, she asked a then-nine-year-old Julie for her favorite color and made it light blue in her honor. After researching which month would be best, Jean decided that August would be SJS Awareness Month, since it was when she learned about SJS, and there wasn\u2019t much happening in August. Jean wrote to all 50 United States governors to get August declared as SJS Awareness Month.\u00a0<\/span><\/p>\n

An SJS survivor studying IT volunteered to help the foundation develop its website and create a registry<\/a> for reporting SJS\/TEN. The registry remains active today and helps gather an accurate count of SJS\/TEN patients and identify successful treatment plans.<\/span><\/p>\n

In its 30-plus years, the foundation has supported thousands globally, hosted numerous SJS awareness events and worked with medical professionals on SJS research to identify causes, genetic markers and treatment plans. The family funded the foundation until SJS survivors and families began donating to offset the cost of printing and mailing informational materials.\u00a0<\/span><\/p>\n

In 2008, at 14 years old, Julie created the SJS Kids Support site<\/a> to explain SJS to children in a way they could understand. Until the mid-2010s, the foundation sent personalized, handmade blankets and teddy bears to children who had recently had SJS.<\/span><\/p>\n

Since 2017, the foundation has had no outside funding and is struggling to continue to provide the support and resources the SJS community needs. Without donations, the foundation cannot continue to serve the SJS community. Your contributions are invaluable and allow us to continue fulfilling our mission to ensure no one goes through SJS alone. To make a tax-deductible donation, <\/span>click here.<\/span><\/a><\/p>\n\n\n\n

Julie Today<\/strong><\/p>\n

\"JulieJulie is the founder of the SJS Kids Support Group and a strong advocate for SJS\/TEN awareness. She holds her bachelor\u2019s in Human Development with a minor in Elementary Education. In 2026, Julie earned her Master\u2019s of Social Work degree with a 4.0 GPA from the Metropolitan State University of Denver. In her free time, Julie enjoys spending her time with her two little boys and dressing up her Catahoula Leopard Dog.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

L’ambiance v\u00e9hicul\u00e9e par win unique casino traduit un soin particulier dans l’organisation visuelle et fonctionnelle. L’ic\u00f4ne d’\u00e9pinglage \u00e0 l’\u00e9cran d’accueil simule l’usage d’une application d\u00e9di\u00e9e. Les missions hebdomadaires apportent une couche ludique suppl\u00e9mentaire qui pla\u00eet aux joueurs r\u00e9guliers. Les retours visuels confirment syst\u00e9matiquement les actions effectu\u00e9es par l’utilisateur. Les croupiers en direct m\u00e9morisent souvent les habitu\u00e9s et personnalisent leurs interventions. Les utilisateurs r\u00e9guliers profitent d’un niveau de traitement acc\u00e9l\u00e9r\u00e9 sur les retraits classiques. Un blog \u00e9ditorial alimente r\u00e9guli\u00e8rement des contenus p\u00e9dagogiques autour du jeu en ligne et des strat\u00e9gies. Les politiques de confidentialit\u00e9 respectent strictement le RGPD europ\u00e9en ainsi que les standards internationaux. Une plateforme \u00e0 observer dans la dur\u00e9e, qui pourrait bien s’imposer comme une r\u00e9f\u00e9rence durable. Julie\u2019s Story In 1996, Jean McCawley founded the Stevens-Johnson Syndrome Foundation after her daughter, Julie, had SJS. Two years before starting the foundation, a 10-month-old, Julie, began to have grand mal seizures and was diagnosed with Pediatric Epilepsy and put on Phenobarbital. When Jean asked about the side effects, she was told the only one was drowsiness. Shortly after starting the anti-convulsant, Julie developed puffy, red eyes and blisters in her ears. Jean rushed her to the pediatrician and was told she had conjunctivitis in both eyes and double ear infections. The pediatrician prescribed an antibiotic, told Jean everything would be fine within a few days and sent them on their way. Little did Jean know that Julie would get much worse. The next day, Julie developed a high fever and blistering rash and was again taken to the pediatrician, who said Julie had Chicken Pox and not to worry. Julie\u2019s condition only worsened as she stopped drinking bottles, as her mouth was blister-filled. Julie began dehydrating, and her fever persisted, so Jean brought her to the emergency room, where they started an IV and gave her her missed dose of Phenobarbital. Julie was admitted and continued to receive her Phenobarbital via IV, all while her blisters increased from the size of a pencil eraser to a dime and a half dollar size. As the days went on, Julie became unrecognizable, as if she had been dipped in a deep fryer. Four days later, on August 18, 1994, Julie was diagnosed with SJS. The diagnosis brought Jean hope and relief, as she believed Julie would soon get better. However, the hope was stolen when a doctor told her, \u201cJean, this is not a good thing.\u201d Jean\u2019s sisters went to the medical library and found the only information they had on SJS \u2014 one lone article. As Julie\u2019s SJS progressed into Toxic Epidermal Necrolysis (TEN), she began a grueling treatment: being debrided daily and wrapped in bandages, given morphine for the pain, and placed on a feeding tube for nutrition. Jean almost lost Julie several times during her hospitalization as her lungs collapsed. There was even a night when her entire family came up to the hospital to say goodbye to her. On Julie\u2019s first birthday, the doctors pried Julie\u2019s eyes open with a lid speculum and broke the news to Jean that Julie was going blind. She was told they would need to perform extensive procedures to save her vision, and not only watched in horror but had to hold Julie down as the doctors swept glass rods under her eyelids to burst the blisters. Jean never left Julie\u2019s side, and after 27 days of fighting for her life, Julie was released from the hospital. Jean was given one lesson on how to place Julie\u2019s feeding tube through her nose and into her stomach just before leaving the hospital. Julie was left with numerous side effects, including being blind in her right eye with low vision in her left, dry eye syndrome, photophobia and deafness.\u00a0 As Julie\u2019s healing process began, Jean found out that blisters had ruptured in Julie\u2019s ears and hardened over her eardrums, making it impossible for her to hear. An ear, nose and throat doctor had to suction the blisters from Julie’s ears to restore her hearing. \u00a0 Starting the Foundation As Julie recovered, Jean felt isolated in their experience with SJS, as the doctors told her it was so \u201crare\u201d that she would \u201cnever meet another person with it.\u201d However, Jean recalled that two other children were hospitalized with SJS at the same time as Julie and couldn\u2019t believe that it was as \u201crare\u201d as they said. A year after Julie\u2019s SJS, Jean created an SJS support group by connecting with another survivor\u2019s family who went to the same pediatrician.\u00a0 Over the first year, the SJS support group slowly grew, and Jean recognized the need for a foundation to provide information and support on SJS. In 1996, Jean filed the paperwork for the first non-profit SJS Foundation, the Julie Foundation for Allergic Drug Reactions. She developed the first version of the SJS Foundation site as an AOL homepage and chatroom, and messages from around the world began to flood in. Jean was on a mission to ensure no one would have to search for information while their loved one was fighting to survive SJS. She compiled all the information she could about SJS into packets to mail to those with SJS and their families. Then, she developed a newsletter featuring informational articles and resources, and spotlighting SJS families to raise awareness and foster connection within the SJS community. Jean\u2019s cousin volunteered to help create an SJS fact sheet, which has since been distributed to hundreds of thousands of families, medical facilities and pharmacies worldwide. \u00a0 Spreading SJS Awareness In 1997, Jean changed the name to the Stevens-Johnson Syndrome Foundation to make it easier for those seeking information on SJS and TEN to find. As the foundation grew, Jean decided it was time there was an SJS awareness ribbon and month. Given that Julie had inspired Jean to found the foundation, she asked a then-nine-year-old Julie for her favorite color and made it light blue in her honor. After researching which month would be best, Jean decided that August would be SJS Awareness Month, since it was when she learned about SJS, and there wasn\u2019t much happening in August. Jean wrote to all 50 United States governors to get August declared as SJS Awareness Month.\u00a0 An SJS survivor studying IT volunteered to help the foundation develop its website and create a registry for reporting SJS\/TEN. The registry remains active today and helps gather an accurate count of SJS\/TEN patients and identify successful treatment plans. In its 30-plus years, the foundation has supported thousands globally, hosted numerous SJS awareness events and worked with medical professionals on SJS research to identify causes, genetic markers and treatment plans. The family funded the foundation until SJS survivors and families began donating to offset the cost of printing and mailing informational materials.\u00a0 In 2008, at 14 years old, Julie created the SJS Kids Support site to explain SJS to children in a way they could understand. Until the mid-2010s, the foundation sent personalized, handmade blankets and teddy bears to children who had recently had SJS. Since 2017, the foundation has had no outside funding and is struggling to continue to provide the support and resources the SJS community needs. Without donations, the foundation cannot continue to serve the SJS community. Your contributions are invaluable and allow us to continue fulfilling our mission to ensure no one goes through SJS alone. To make a tax-deductible donation, click here. Julie Today Julie is the founder of the SJS Kids Support Group and a strong advocate for SJS\/TEN awareness. She holds her bachelor\u2019s in Human Development with a minor in Elementary Education. In 2026, Julie earned her Master\u2019s of Social Work degree with a 4.0 GPA from the Metropolitan State University of Denver. In her free time, Julie enjoys spending her time with her two little boys and dressing up her Catahoula Leopard Dog.<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":428,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-445","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/sjsupport.org\/index.php?rest_route=\/wp\/v2\/pages\/445","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sjsupport.org\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/sjsupport.org\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/sjsupport.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/sjsupport.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=445"}],"version-history":[{"count":21,"href":"https:\/\/sjsupport.org\/index.php?rest_route=\/wp\/v2\/pages\/445\/revisions"}],"predecessor-version":[{"id":3343,"href":"https:\/\/sjsupport.org\/index.php?rest_route=\/wp\/v2\/pages\/445\/revisions\/3343"}],"up":[{"embeddable":true,"href":"https:\/\/sjsupport.org\/index.php?rest_route=\/wp\/v2\/pages\/428"}],"wp:attachment":[{"href":"https:\/\/sjsupport.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=445"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}