Living with Duchenne Archives - Walking Strong https://walkingstrong.org/category/living-with-duchenne/ Together, We Can Cure Duchenne Muscular Dystrophy Thu, 22 May 2025 13:52:14 +0000 en hourly 1 https://walkingstrong.org/wp-content/uploads/2018/04/favicon-150x150.png Living with Duchenne Archives - Walking Strong https://walkingstrong.org/category/living-with-duchenne/ 32 32 Helping Hunter and Carlos – and Their Moms! https://walkingstrong.org/assistive-lift-devices-for-duchenne/ Sun, 10 Sep 2023 13:15:13 +0000 https://walkingstrong.org/?p=10392 Assistive lift devices for Duchenne Muscular Dystrophy At Walking Strong, our mission is to provide essential assistance to individuals and families facing the challenges of muscular dystrophy. We believe that everyone deserves the opportunity to live their lives to the fullest, regardless of the obstacles they may encounter. Today, we want to share the heartwarming […]

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]]> Power Soccer League Defies the Odds – A Triumph of Spirit https://walkingstrong.org/power-soccer/ https://walkingstrong.org/power-soccer/#respond Wed, 02 Aug 2023 19:08:12 +0000 https://walkingstrong.org/?p=10321 A Journey of Six Teenage Boys Battling Duchenne, Uniting as a Team, and Triumphing as Champions When we first received the devastating diagnosis of Duchenne for our son, Alex, our dreams of him sharing the love of sports and playing competitively seemed shattered. However, seven years later in 2018, everything changed when we discovered U.S. […]

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]]> https://walkingstrong.org/power-soccer/feed/ 0 Water – A refuge from Duchenne https://walkingstrong.org/water-a-refuge-from-duchenne/ Fri, 12 Jul 2019 21:38:41 +0000 https://walkingstrong.org/?p=7656 I am sitting and watching my boy experiencing freedom. Free from his wheelchair, free from constriction, and tightness and free from Duchenne – for a moment. We are in Miami, basking in the warm and humid weather, and my son is floating in the water light as air and is soaring. The sun is beating […]

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]]> Duchenne Parent Guide for Sanity https://walkingstrong.org/duchenne-parent-guide-for-sanity/ Sat, 27 Apr 2019 00:02:15 +0000 https://walkingstrong.org/?p=7634 It is not often that we find tools and resources for parents for coping and living with Duchenne.   Each one of us is consumed in finding the best therapy for our boys, getting them into the right clinical and the best clinical care. NONE of us are focusing on our own needs.   What?  Do we […]

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]]> The Basketball Hoop https://walkingstrong.org/the-basketball-hoop/ Thu, 03 Aug 2017 04:43:36 +0000 https://walkingstrong.org/?p=6805 There’s a basketball hoop standing in my backyard.   In February, Alexander begged us for it, even though his walking began to decrease in December. He loved it and was so proud of himself every time he would make a basket, albeit the hoop was hung very low to accommodate him.   He was flip flopping between […]

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]]> Clinical Trial – Day 1 https://walkingstrong.org/clinical-trial-day-1/ https://walkingstrong.org/clinical-trial-day-1/#respond Thu, 09 Jul 2015 18:21:04 +0000 https://walkingstrong.org/?p=6416 I guess you can say – “we are lucky.’   After 5 days of putting Alexander through extensive testing (a 3 hour MRI, extensive bloodwork, ECG, Pulmonary, 2 days of physical therapy assessment,   fecal testing (ek!) and a physical exam), we received official word last night that he was accepted into a clinical trial for a […]

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