Maxwell’s story
From a hospital cot to the fourteen-year-old he is today.
Maxwell was a healthy baby. At nine months old he went into hospital with tonsillitis, and came out of it a different child. What follows is his life since — the hard parts and the good ones, which there have been many more of than anyone expected.
- Nine months old
The feed that changed everything
Recovering from tonsillitis in hospital, a rushed feed caused Maxwell to choke and fill a lung with milk. The aspiration and infection that followed activated his mitochondrial disorder, switching off seventy per cent of his muscles instantly.
- The years after
A name for it: TK2d
Testing eventually gave the condition a name — thymidine kinase 2 deficiency syndrome. A genetic disorder with no cure, causing progressive weakness of the body’s muscles.
- Childhood
Home, school and a little sister
Maxwell came home. He went to school. His sister arrived and has never known life without him. The ventilator, the hoist and the standing frame became part of ordinary family furniture.
- Every week
The work that keeps him well
Physiotherapy, hydrotherapy and time in the standing frame protect his hips, his chest and what muscle function he has. It is relentless, and it is the reason he is still here.
- Today
Fourteen
Sunglasses, a baseball cap and strong opinions about where he wants to go. Maxwell is still totally dependent on the people around him — and still getting out into the world as often as he possibly can.
Out in the world
Giraffes, owls, steam engines, the sea. Maxwell gets out more than most people expect.
The people around him
Maxwell is supported twenty-four-seven by his family, his friends and an extraordinary care team — and by people who have abseiled, run and fundraised for him without ever having met him.
Help give Maxwell a chance
Every donation goes towards the equipment, therapy and care that make his days better.