{"id":11774,"date":"2014-12-09T06:43:55","date_gmt":"2014-12-09T14:43:55","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11774"},"modified":"2025-12-30T06:46:44","modified_gmt":"2025-12-30T14:46:44","slug":"sarah-and-zo-berman-story-hope-recovery","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/sarah-and-zo-berman-story-hope-recovery\/","title":{"rendered":"Sarah and Zo\u00e9 Berman: A Story of Hope & Recovery"},"content":{"rendered":"
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A Story of Hope and Recovery<\/h2>\n<\/div>\n
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Sarah Berman distinctly remembers the\u00a0day\u00a0seven years ago\u00a0when she and her newborn daughter Zo\u00e9 first met with a physical therapist. Zo\u00e9, who was diagnosed with congenital myotonic dystrophy shortly after birth, had very little muscle strength\u00a0and could not move on her own.<\/p>\n

\u00ab\u00a0The therapist asked me, ‘What are your goals for your daughter?'\u00a0\u00bb Sarah recalls. \u00ab\u00a0There was a child’s toy sitting on the table. It was a top that you had to press to make it spin,\u00a0\u00bb she explains. \u00ab\u00a0I remember telling her, ‘I want my daughter to be able to play with that toy.'\u00a0\u00bb<\/p>\n

That day was the start of what Sarah calls \u00ab\u00a0an amazing journey.\u00a0\u00bb She spent hours every morning moving Zo\u00e9’s arms and legs, and the therapist came once a week to sing and play with her daughter. Zo\u00e9 also received weekly physical therapy at the local hospital.<\/p>\n

The hard work and early intervention paid off. \u00ab\u00a0They told me Zo\u00e9 would likely be permanently confined to a wheelchair, but now she walks and even runs,\u00a0\u00bb says Sarah.<\/p>\n

Sarah’s determination and her belief in her daughter’s abilities have remained constant since then. With the support of her husband David, she has sought out the best treatments, services and programs available near their San Francisco Bay Area hometown of Piedmont, California.<\/p>\n

Today, Zo\u00e9 is an active and busy girl. In addition to her school schedule, she receives special tutoring and physical, occupational and speech therapy. She also participates in hippotherapy, a treatment approach that uses movements characteristic of a horse, usually through horseback riding, to provide motor and sensory therapy. Sarah feels this exercise in particular has been very helpful to her daughter, and\u00a0co-led a presentation on the benefits of\u00a0working with hippotherapy<\/a>\u00a0during the\u00a02014 MDF Annual Conference.<\/a><\/p>\n

Tackling Multiple Challenges<\/h2>\n

As Zo\u00e9 has grown, Sarah has observed other conditions that can accompany a congenital DM diagnosis. More recently, social issues at school have started to emerge and Zo\u00e9 is enrolled in a social play group to help foster interaction with others.<\/p>\n

\u00ab\u00a0There are always new challenges, but Zo\u00e9 is really a trooper. Nothing fazes her,\u00a0\u00bb Sarah explains.<\/p>\n

In addition to her role as caregiver for Zo\u00e9, Sarah has had to balance care for herself as well. She was diagnosed with DM1 after Zo\u00e9 was born, and her family subsequently discovered that her father, brother, and other extended family members were also affected.<\/p>\n

Support from the MDF Community<\/h2>\n

While the impact of DM on her family has been far reaching, Sarah says that connecting with the DM community has helped her tremendously. One of her greatest sources of support and information has been the virtual MDF Caregivers Support Group, where she is able to get and share advice and input on issues that arise. Sarah’s connection with MDF has also given her a newfound sense of purpose. She helped facilitate a\u00a0webinar for parents of children with congenital DM<\/a>,\u00a0attended the MDF Annual Conference for the first time this year, and has enrolled herself and Zo\u00e9 in several DM research studies.<\/p>\n

\u00ab\u00a0The MDF community is my extended family,\u00a0\u00bb says Sarah. \u00ab\u00a0The support I’ve received has been tremendous – I’ve met so many amazing people who I have so much in common with.\u00a0\u00bb<\/p>\n

Sarah feels empowered by the opportunity to share her message and reach out to other parents. She regularly posts to a blog she launched entitled \u00ab\u00a0Zo\u00e9’s Latest Adventures and Other Stuff<\/a>.\u00a0\u00bb Though the project was started as a way to share her day-to-day experiences with family and friends, Sarah was pleased to learn it has been helpful to other parents raising children with DM.<\/p>\n

\u00ab\u00a0This disease is a marathon. It’s a life-changing experience,\u00a0\u00bb comments Sarah. \u00ab\u00a0It’s made me a better person – someone who wants to be involved and to help others along the way.<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11775,"template":"","class_list":["post-11774","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11774","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\/11775"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11774"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}