{"id":11782,"date":"2014-10-08T06:51:23","date_gmt":"2014-10-08T13:51:23","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11782"},"modified":"2025-12-30T06:52:39","modified_gmt":"2025-12-30T14:52:39","slug":"pontifex-family-strength-through-community","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/de\/family-stories\/pontifex-family-strength-through-community\/","title":{"rendered":"The Pontifex Family: Strength Through Community"},"content":{"rendered":"
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Three years ago, Sarah and Sam Pontifex of Adelaide, Australia, had never heard of myotonic dystrophy, but their three children were experiencing shared symptoms that they knew could not be the result of mere coincidence. Unfortunately, when they consulted doctors they were repeatedly told that Lucy\u2019s extreme fatigue, Sophie\u2019s club feet, Harry\u2019s speech and motor difficulties, and all three children\u2019s developmental delays were unrelated. Although some of their questions were answered when Sam and all three of the children were diagnosed with DM1, they continue to feel that those around them \u2013 including their doctors \u2013 do not fully understand what a diagnosis of myotonic dystrophy really means and what the impact of the disease has been on their family.<\/div>\n<\/div>\n
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As the\u00a0family\u00a0caregiver, Sarah\u00a0has had to\u00a0navigate the medical, therapeutic and educational landscapes on her own.\u00a0\u201cIt often feels like a long and lonely journey when everyone else around you seems so mainstream,\u201d Sarah says.\u00a0Sarah and Sam have often been told that they are simply overprotective parents,\u00a0that their gastrointestinal issues are due to stress,\u00a0and\u00a0that their children will\u00a0outgrow\u00a0their symptoms as they get older.\u00a0When Sarah discovered the\u00a0Myotonic\u00a0website\u00a0earlier this year\u00a0she\u00a0finally\u00a0received validation\u00a0that what her children and husband were experiencing was\u00a0typical for a DM diagnosis and that their struggles were very real.<\/p>\n

Speaking to other Myotonic community members has been enormously\u00a0helpful\u00a0for\u00a0Sarah and Sam.\u00a0Earlier this fall, Sarah made a trip to California and\u00a0for the first time\u00a0met with\u00a0others impacted by\u00a0myotonic\u00a0dystrophy.\u00a0She also met with the Myotonic team to learn more about the disease and the resources available to her.\u00a0The family\u00a0plans to attend the 2015 Myotonic\u00a0Annual Conference in Washington, DC, in order to continue\u00a0their\u00a0education\u00a0and build a supportive network of others engaged in the DM journey.<\/p>\n

Though Sarah\u00a0hasn’t met other Australians with\u00a0myotonic\u00a0dystrophy, she has been able to connect with\u00a0Myotonic community members\u00a0through the\u00a0Myotonic Caregivers Group<\/a>, the Myotonicwebsite, and the\u00a0Dispatch newsletter<\/a>. She particularly enjoys the\u00a0family stories<\/a>. \u201cThey are heartwarming and provide me with a great deal of comfort and inspiration,\u201d she says. \u201cWhenever I feel a little bit lonely or isolated from friends, I always turn to Myotonic\u2019s website and its wonderful resources.\u201d<\/p>\n

Throughout the month of November, Myotonic will celebrate caregivers like Sarah from around the world by featuring their stories during\u00a0National\u00a0Family Caregivers\u2019 Month.<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11783,"template":"","class_list":["post-11782","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/family-stories\/11782","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media\/11783"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media?parent=11782"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}