{"id":73260,"date":"2025-08-06T08:00:00","date_gmt":"2025-08-06T07:00:00","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=73260"},"modified":"2026-05-07T13:27:57","modified_gmt":"2026-05-07T12:27:57","slug":"how-to-communicate-with-a-child-who-has-charge-syndrome","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/toolkit\/how-to-communicate-with-a-child-who-has-charge-syndrome\/","title":{"rendered":"How to communicate with a child who has CHARGE syndrome"},"content":{"rendered":"\n\t
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When your child has CHARGE syndrome, everyday life can bring unique and unexpected challenges. The journey you face as a parent of a child with a rare genetic condition can be complicated, especially when it comes to communication. But at Sense, we believe every child deserves to be heard, understood, and celebrated.<\/p>\n\n\n\n

For CHARGE Syndrome Awareness Day, we\u2019re celebrating the children and young people with CHARGE syndrome who are supported by our MSI service<\/a>. This team of specialist MSI teachers and practitioners provide personalised, flexible support tailored to the unique needs of children and young people aged up to 25 with multi-sensory impairments, including CHARGE syndrome.<\/p>\n\n\n\n

Here\u2019s what some of our families say:<\/strong><\/p>\n\n\n\n

\u201cYou feel welcomed and included, which is brilliant. That support will be invaluable in helping you navigate your way through your child\u2019s needs.\u201d<\/em><\/em><\/p>\n\n\n\n

\u201cIt\u2019s been a big help for us as a family. A really important thing for us is to know that we\u2019re not alone and there is a community of people around.\u201d<\/em><\/em><\/em><\/p>\n\n\n\n

\u201cThey have a tremendous impact on the family. They are part of our life. It means a lot for families like us. We really recommend it to other families who need this kind of support.\u201d<\/em><\/em><\/em><\/p>\n\n\n\n

Visit our MSI service<\/a> page to find out more about how we can support your family.<\/p>\n\n\n\n

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Now, let\u2019s start by breaking down what CHARGE syndrome means. Understanding the condition is an important step towards understanding the child.<\/p>\n\n\n\n

What is CHARGE syndrome?<\/strong><\/h4>\n\n\n\n

CHARGE syndrome is a rare genetic condition that can affect multiple parts of the body. When it was first recognised CHARGE was an acronym with each letter representing a characteristic of the syndrome. We now know that there is a wider range of physical and sensory characteristics. <\/p>\n\n\n\n

The most common features involve the ears, eyes, heart, nasal passages, genitals, and growth. However, it\u2019s important to note that not everyone with CHARGE syndrome will have all of these differences. The condition and its severity can vary from person to person.<\/p>\n\n\n\n

Behind those clinical terms that come with the diagnosis is a child with a unique personality. Many of the young people we support at Sense could be better described by a different kind of acronym:<\/p>\n\n\n\n

C<\/strong>reative<\/p>\n\n\n\n

H<\/strong>umorous<\/p>\n\n\n\n

A<\/strong>ctive<\/p>\n\n\n\n

R<\/strong>egulative<\/p>\n\n\n\n

G<\/strong>oal-directed<\/p>\n\n\n\n

E<\/strong>xplorative<\/p>\n\n\n\n

CHARGE syndrome can be one of the most medically and developmentally complex conditions we know, but it\u2019s also one of the most extraordinary.<\/p>\n\n\n\n

In this blog, we\u2019ll explore ways to communicate with children who have CHARGE syndrome. Here are some practical steps you can take to support that communication.<\/p>\n\n\n\n\t

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