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 buy levitra in australia 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
- 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 […]