{"id":1028,"date":"2021-11-22T08:51:22","date_gmt":"2021-11-22T08:51:22","guid":{"rendered":"https:\/\/ring14usa.com\/?page_id=1028"},"modified":"2021-11-22T08:51:24","modified_gmt":"2021-11-22T08:51:24","slug":"siblings","status":"publish","type":"page","link":"https:\/\/ring14usa.com\/index.php\/siblings\/","title":{"rendered":"Siblings"},"content":{"rendered":"\n
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It\u2019s tough for kids who have a brother or sister with neurodevelopmental challenges. Siblings may experience a wide range of emotions due to the unpredictability of day-to-day life caused by Ring14 syndrome. That\u2019s why it\u2019s important to recognize the role these siblings play in their sibling\u2019s care, validate their emotions, and give them tools to cope and express their feelings.\u00a0<\/p>\n\n\n\n

Thanks to Zogenix and their collaboration with more than 10 rare epilepsy advocacy groups, there are now new resources to support siblings and their families.<\/p>\n\n\n\n

Specially tailored for both younger and older siblings of children living with rare epilepsies, the tools are designed to help siblings express and talk about their feelings with peers and the adults around them. These kits also allow for the adults to talk to the siblings in their lives.<\/p>\n\n\n\n

There are also resources for parents, helping them to recognize when their child may be struggling and to find ways to show the siblings that they are special, loved and appreciated.<\/p>\n\n\n\n

These resources were developed in response to the needs of the community, and in response to insights uncovered by the\u00a0Siblings Voices Study<\/a>, a published study that assessed the emotional impact of growing up with a sibling with a Developmental and Epileptic Encephalopathy.\u00a0 Developmental and Epileptic Encephalopathy (DEE) refers to a group of severe epilepsies that are characterized both by seizures, which are often drug-resistant, as well as encephalopathy, which is a term used to describe significant developmental delay or even loss of developmental skills. Ring14 Syndrome is a DEE.<\/strong><\/p>\n\n\n\n

PARENTS & CAREGIVERS KIT<\/h3>\n\n\n\n
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The Parents & Caregivers Kit was created based on research, guidance, and inspiration from patient organizations in the rare epilepsy community and from HCP and mental health experts specializing in rare seizure disorders. We hope it can offer support and resources for families who are impacted by rare epilepsies. Here\u2019s a peek at what\u2019s included in this kit-by-mail.<\/p>\n\n\n\n