Our son Maddux was born February 4th 2005 in Denver, Colorado. We went into the hospital, expecting to bring home a healthy baby boy, and were baffled when he wasn’t able to breathe or move on his own. We removed him from life support on February 10th 2005. Four months after his death, and autopsy, only then were the doctors able to tell us about his condition. Myotubular Myopathy (MTM1). Please help find a cure for Myotubular Myopathy, so no other parent has to experience the pain and heartache from the death of their precious child with this condition.
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NEWS & UPDATES
- A new UK-based research project to understand ‘normal breathing’ in under 6’s calls for participants to help our XLMTM communityOctober 11, 2019About the “Breathing Muscle Strength in Healthy Children” Study at Brunel University London Brunel University London is involved in an […]
- The First Cork Hope WalkOctober 8, 2019It really didn’t matter that it rained on and off, nothing could spoil the good mood of the walkers who had come along for the first Cork Hope Walk. The 8km walk, which was arranged by Orla Lynch and Stephen Stack, took us along the beautiful Rochestown to Blackrock coastal path. The views were stunning despite the grey sky, and we even got to admire Blackrock Castle where we stopped for the obligatory group photos. […]
- Fundraising For RubenOctober 8, 2019Over 230 guests attended a hugely successful evening event that was arranged by Siân Carson whose gorgeous one year old son, Rubén, has myotubular myopathy. For the price of their tickets guests got to enjoy a beautifully decorated venue, lovely food, great music and endless great opportunities to raise funds. And boy did they do an amazing job of raising funds… […]
- The Devon Hope Walk turns into a series of walks, raising over £1300 for Myotubular Trust!September 11, 2019This year we tentatively planned a fourth Devon Hope Walk for the Myotubular Trust for early September, hoping everyone could make it, after once […]
- Pretty Muddy Race For Life 2019September 4, 2019Massive thanks and congratulations to Sarah, Emily and Tara, who recently took part in the 10K Pretty Muddy Race for Life at Sefton Park, Liverpool. […]