Zak is a typical 15 years old, but has x-linked Myotubular Myopathy 'MTM'.

However, he is one of the lucky ones, born more mildly affected than many with the condition meaning that he never needed help with his breathing after birth nor in his early years; 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 (about every 3 weeks), 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. Zak started night-time ventilation via a bi-pap machine and nose mask when he was 14 because we discovered he was breathing very shallowly at night, and this caused him headaches in the morning and feeling 'groggy'.

Becoming a teenager and some rapid growth proved to be a cruel and challenging time for Zak - he had 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 and walking. 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.

Some weekends Zak enjoys wheelchair football and has even had a go at wheelchair table tennis - although he has had to re-learn the game playing in a sitting position, which has been tricky to master.

Zak goes to a regular mainstream secondary school and is academically very bright and capable - he fatigues quite easily so can't manage a full timetable. We are hoping this fatigue will improve once he's stopped growing. He is very much part of the school and has a wide group of friends who mostly share his enjoyment of PS3 games and BB Guns! He's even managed to find a BB gun with an easy trigger so he can enjoy target practice with his mates (and sometimes at his mates!) His passion is the Army, just like his grandad's - and it would be his dream to join up. He is certainly able to achieve this academically gaining straight A and A* grades - so 'Intelligence Corps' watch this space.......!

Zak is our lovely, highly intellectual and determined young man; who takes what he has been dealt in his stride, and still manages to see the hysterically funny side of life. His motto in life is 'be grateful for what you do have'.