We have 2 beautiful boys with Myotubular Myopathy. My eldest son Trent was born in 1999, right from birth he struggled to breathe, the doctors were unable to diagnose him at first, he finally came home after 8 weeks in hospital. Nine months later (2000) his brother Zac was born.
As Trents weakened condition was put down to what the doctors thought was a stroke, we expected to have a healthy baby boy. However, Zac too was born ‘floppy’ and this left the doctors stumped. A few months later and many tests later a muscle biopsy was carried out and it was discovered that the boys had Myotubular Myopathy X linked.
The years that followed were extremely difficult financially, physically and most of all emotionally. Our boys spent most winters in hospital with pneumonia for long periods of time. During these years however, due to extensive physio, occupational therapy and speech therapy they learnt to walk (slowly) eat some meals and speak, something all the specialists said they wouldn’t do. We remember the day that we went to see a genetisist and she said ‘you’re lucky they have lasted to 1 year old don’t get attached to them’. From that day on we swore to fight for our boys not only to live but to have a great quality of life. It wasn’t too hard though because Trent and Zac had amazing fighting spirits and beautiful temperaments.
In 2004, Trent developed chronic respiratory disease. He spent 6 weeks in ICU were the doctors said he wouldn’t come home. Again, he proved them wrong and made it home. A week later after spending a beautiful week together his little body gave up and he passed away at age 5.
We miss him so much, inparticular his little brother Zac who is now 6 years old has not only had to deal with such a huge loss in his brother but also look at his own mortality. It is hard for him to understand why he is getting weaker and why his body doesn’t allow him to do things other children his age do.
It would be absolutely unbearable to loose Zac like we lost Trent so we are so glad that charities like Myotubular Trust have been set up to look for a cure, so that these precious children can live longer and better lives and hopefully full lives.