Jeno is a 5 year old boy with Myotubular Myopathy. Most of the times he is a very happy boy, but sometimes, when he realises he is different from his older brother and friends, he feels sad about his weak muscles. Jeno likes to join in with games played by his friends, but sometimes they laugh when he runs as hard as he can but falls and can’t get up without help. And, sometimes, when Jeno coughs in the morning it worries him as he thinks he is going to get pneumonia again and have to stay in hospital.
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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. […]