{"id":11823,"date":"2013-12-03T07:24:47","date_gmt":"2013-12-03T15:24:47","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11823"},"modified":"2025-12-30T07:26:01","modified_gmt":"2025-12-30T15:26:01","slug":"jessicas-story-tale-three-sisters","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/jessicas-story-tale-three-sisters\/","title":{"rendered":"Jessica’s Story: A Tale of Three Sisters"},"content":{"rendered":"
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Jessica Flynn, 26, grew up with a mother and twin sisters who all live with myotonic dystrophy; her mother has adult onset DM, and her sisters have congenital DM. Although Jessica hasn\u2019t experienced any symptoms, she\u2019s in the process of getting tested to determine if she\u2019s a carrier. Jessica often hears the comment, \u201cIt must have been so hard growing up with family members affected by DM,\u201d but she didn\u2019t see it as a burden or a problem, it was just her normal life.<\/div>\n<\/div>\n
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Mother-Daughter Bond<\/h2>\n

Jessica\u2019s mother, Robin, was a ballerina for 16 years and began to suspect that something was wrong when she was still a teenager. Robin started noticing myotonia in her hands, and soon discovered that DM was carried in her genes from her mother\u2019s side of the family. Regardless of genetics, Jessica says her mother remained active and DM didn\u2019t greatly affect her quality of life for some time.<\/p>\n

\u201cMyotonic dystrophy didn\u2019t really begin to affect my mother\u2019s life until her late 30s or early 40s, when she started falling down a lot,\u201d Jessica says. \u201cSince then, the disease has progressed pretty severely — it\u2019s very hard for her to walk, and she had to get a pacemaker about 10 years ago. As she ages, her facial muscles are weakening and she also has a lot of daytime sleepiness.\u201d<\/p>\n

Though Jessica started to notice her mother\u2019s health deteriorating when she was a child, it wasn\u2019t until adulthood that she realized the direction this disease was taking and what that potentially meant for her.<\/p>\n

Jessica\u2019s grandmother, Katie Walter, discovered Myotonic, got involved and began educating herself so she could better understand what her stepdaughter and granddaughters were experiencing.\u00a0 In fact, Katie and Jessica attended their first Myootnic Annual Conference together a few years ago. \u201cOne thing I learned was that even though I don\u2019t have any symptoms, I could still have the disease,\u201d Jessica states. \u201cI could follow a similar path as my mother or could pass DM on to my children. Knowing this, we\u2019re seeing geneticists to remain proactive.\u201d<\/p>\n

Understandably, simple blood tests have been emotional. \u201cOn one hand, I want to know if I have the repeat expansion. On the other, I don\u2019t think it would stop us from having more children,\u201d she says.\u00a0 A year after finding out that she needs to be tested, she says it\u2019s been difficult to get the tests because her mother hadn\u2019t even had her tests completed until recently.<\/p>\n

Sisterhood<\/h2>\n

Jessica\u2019s twin sisters, Rebecca and Sandra, were born prematurely and immediately diagnosed with DM. \u201cWhile I was growing up, DM was normal for me; it was just the way our family was,\u201d Jessica explains.\u00a0 \u201cI started noticing differences between me and my sisters when I began to develop mentally and they didn\u2019t.\u201d Rebecca and Sandra, now 28, live with their mother and, developmentally, remain at about a five-year-old age level. \u00a0They\u2019re also physically small for their age.<\/p>\n

\u201cIt wasn\u2019t difficult growing up in a family like mine. It\u2019s just a part of my life; it\u2019s who we are,\u201d Jessica says. \u201cMy sisters and I are very close. As kids, we did everything together. It wasn\u2019t until I was in middle school that I started noticing that we were different. Suddenly, we didn\u2019t have a lot in common. But that didn\u2019t affect how I felt about them.<\/p>\n

\u201cEventually, however, I realized I was different and it was harder for me to connect with them the way I once did. I started making my own friends and finding my own identity. Now that I\u2019m married, live away from them, and am starting my own family, we don\u2019t have the same sister relationship. But when my daughter was born, our family dynamic changed again. My sisters love babies. They love her, they dote on her, and that has brought us back together.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11824,"template":"","class_list":["post-11823","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11823","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media\/11824"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11823"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}