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
- Pretty Muddy Race for LifeApril 8, 2019We are so grateful to Sarah Woods and her family for their very generous donations in memory of their wonderful Uncle Billy – our thoughts are […]
- Your help with a 20 minute online survey can lead to improvements in long term ventilation care in the UKFebruary 21, 2019Our UK based families are invited to complete a short, anonymised online survey to help improve standards of care for long-term ventilated children […]
- London insurance market runners sacrifice their lunch break to run 5K or 10K for Myotubular Trust!February 19, 2019On Friday 8th February, despite horrid weather, a crowd of hardy London insurance market runners sacrificed their lunch break to support Myotubular […]
- NCB invites you to join an online focus group interview to help improve care for LTV children and young adults in the UKFebruary 13, 2019Do you have approximately 90 minutes to spare to help with an important study that will aim to improve care for long-term ventilated children and […]
- Gene therapy in x-linked myotubular myopathy education resource is launched by the American Society of Gene & Cell TherapyFebruary 12, 2019Patients suffering from x-linked myotubular myopathy (XLMTM) do not have enough of the myotubularin protein, so the body may require a ventilator to […]