In May, 1988, my husband and I received news that our beautiful newborn daughter, Kathleen, had a rare condition called agenesis of the corpus callosum.\u00a0\u00a0 We experienced such a flood of emotions it is hard, even now, to describe them. We knew nothing about what the future held for us, but only that this was a major, life-changing event.<\/p>\n
Almost twenty years later, I am happy to say that we are all doing well. I am writing to welcome you to the ACC Network.\u00a0 Our lives have been enriched and made easier by this network in countless ways.<\/p>\n
Information.\u00a0 When Kathleen was born, the only bits of information I could find about ACC were medical dictionary definitions of \u201cagenesis\u201d and \u201ccorpus callosum.\u201d\u00a0\u00a0 Our neurologist gave us a very short explanation in his own words, but was not able to direct us to any resources.\u00a0\u00a0 Many years later, we have access to a growing body of information about medical, developmental, educational, and social aspects of our child\u2019s condition.\u00a0 We don\u2019t have all the answers, but we have a place to ask the questions, and little by little we are finding answers.<\/p>\n
Support and Networking..\u00a0 When Kathleen was born, we actually found support more quickly than we found information: family members, nurses, therapists, and other parents of children with special needs offered us kindness and support right from the start.\u00a0 None of them actually had experience with ACC, however, and we were often left feeling alone.\u00a0 Kathleen was \u2026 different, even from other children with special needs we would meet.<\/p>\n
Through the ACC Network, we were able to communicate with others affected by ACC.\u00a0 It was an incredible feeling to finally meet other families who understood exactly what we were experiencing. The ACC Network has provided us with directories, group meetings, an internet support group, surveys, and the opportunity to connect with researchers.\u00a0 Being able to share our experiences has made it much easier to deal with difficult times and to look forward to the future.\u00a0 Our everyday experiences \u2013 good and bad \u2013 have helped other families who faced some of the same situations.\u00a0\u00a0 Our search for answers to our daughter\u2019s challenges has helped the body of information about ACC to grow.<\/p>\n
Whatever your reason for visiting the ACC Network, I would like to welcome you to this wonderful organization.\u00a0 I hope that you will be as enriched by the experience as we have been.<\/p>\n
JoAnne Tully
\nMother of Kathleen, 19 years, with complete ACC<\/p>\n","protected":false},"excerpt":{"rendered":"
In May, 1988, my husband and I received news that our beautiful newborn daughter, Kathleen, had a rare condition called agenesis of the corpus callosum.\u00a0\u00a0 We experienced such a flood of emotions it is hard, even now, to describe them. We knew nothing about what the future held for us, but only that this was […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":940,"menu_order":1,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_kad_blocks_custom_css":"","_kad_blocks_head_custom_js":"","_kad_blocks_body_custom_js":"","_kad_blocks_footer_custom_js":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-1446","page","type-page","status-publish","hentry"],"taxonomy_info":[],"featured_image_src_large":false,"author_info":{"display_name":"","author_link":"https:\/\/umaine.edu\/edhd\/author\/"},"comment_info":"","_links":{"self":[{"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/pages\/1446","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/comments?post=1446"}],"version-history":[{"count":2,"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/pages\/1446\/revisions"}],"predecessor-version":[{"id":8880,"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/pages\/1446\/revisions\/8880"}],"up":[{"embeddable":true,"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/pages\/940"}],"wp:attachment":[{"href":"https:\/\/umaine.edu\/edhd\/wp-json\/wp\/v2\/media?parent=1446"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}