Living with TK2d
Water is the one place Maxwell is free.
He is 14, and a rare mitochondrial disease means he cannot walk, talk or breathe without a ventilator. In the pool his body is weightless and he can move for himself. Help us keep it open to him all year round.
Maxwell today
He is not a little boy any more
For years this site showed a small child. Maxwell is fourteen now — with his own sense of humour, his own opinions about where he wants to go, and a family still fighting for the things that would make his days better. What has not changed is the care. Twenty-four hours a day, every day, without a break.
The diagnosis
What Maxwell lives with
Maxwell has thymidine kinase 2 deficiency syndrome (TK2d), a genetic disorder that causes progressive weakness of the body’s muscles. He became ill at nine months old. While recovering from tonsillitis in hospital, a rushed feed caused him to choke and fill a lung with milk. The aspiration and the infection that followed activated his mitochondrial disorder, switching off seventy per cent of his muscles instantly.
Totally dependent
He can't move his arms or legs He can't chew or swallow He can't move his eyes in their sockets He can't blink He can't talk He can't breathe without a ventilator His condition is life limiting There is no cure
As Maxwell’s dad my job is to look after my son. He is the centre of our life and every day we get the biggest reward from the smallest of things.
Latest
What Maxwell has been up to
Days out, new things tried, and the occasional frog. We post here whenever there is something to share.
How you can help
What we are raising money for
The swim spa is in. What Maxwell needs now is the means to use it — all year round, whenever his body is up for it.
A building for the swim spa
A proper building around the swim spa, with a floor, doors, windows, heating, ventilation and electrics, so Maxwell can use it all year round. In the water his body is weightless and he can move for himself. This is the big one.
£125,000 to raise
Backup power for his equipment
Maxwell’s ventilator, humidifier, oxygen monitor, suction machines, profiling bed and hoist all run on mains power. A home battery system would keep every one of them going for around 24 hours in a power cut, including the planned cuts from 2027.
£8,800 to raise
An upgraded pool hoist
A new in-ground hoist, fitted in the pool room, to lift Maxwell into the water safely and comfortably. Much of his equipment hasn’t been updated in a long time, and this one is built for the job. Includes fitting.
£7,000 to raise
A family trip to Disneyland Paris
Three nights away for the seven of us, Maxwell included: an accessible room, park tickets, food, and a profiling bed and hoist delivered to the hotel so he can stay safely. A chance to make memories together, away from hospitals.
£28,200 to raise
Get involved
Help give Maxwell a chance
There are many ways you can help. Every donation goes towards an improved quality of life.