Zak is 13 years old and has x-linked Myotubular Myopathy 'MTM'.

He is one of the lucky ones, born more mildly affected than most with the condition meaning that he never needed help with his breathing; and he even managed to walk and 'run' (or walk fast) from the age of 3 until nearly his teens.

In spite of relatively good and strong respiratory function, Zak suffered significant numbers of colds and viruses as a fragile young baby, resulting in 7 episodes of lung collapse and pneumonia before the age of 3 years. Thankfully, his lung function improved over the years meaning we were able to stop the suctioning to clear his airways between ages of 2 and 3, and from about the age of 4 gave less and less 'daily' chest physio. By 8 years of age, we were finally able to stop giving him daily (rotational) prophylactic antibiotics. We now keep dry antibiotics at home to give at the first sign of any chest infection - which is rare these days. The statistics for the condition are tragically grim - but Zak is a fighter and is now one of the 1% of children who has made it past 10 years of age.

Being a teenager and some rapid growth is proving to be a cruel and challenging time for Zak - he is having to mentally adjust to not being able to do the things that he once did so easily, such as getting up to standing from sitting and weight-bearing. Zak uses lots of equipment to help him move around 'independently' including a powered wheelchair and all-terrain vehicle - which means that he can pretty much join in with the normal family activities that most children his age will take for granted. Despite his physical limitations, Zak is full of life and loves it; he is always willing to have a go at something new! His favourite hobbies (other than PS3 - which he has perfected!), are mackerel fishing, kayakking and bread making with his dad! He has tried surfing, body boarding and especially loves to swim so we try to take him a minimum of 3 times each week. In water Zak feels completely 'normal' and weightless: and it reminds him of how it felt to walk and move around more easily.

Zak is our beautiful, gentle, highly intellectual and determined boy; who takes what he has been dealt in his stride, and still manages to see the funny side of life. With an amazing sense of humour... he always delivers the funniest punchlines and regularly has us all in stitches of laughter!