Little Maxwell’s parents are relieved to have their baby finally home after he spent seven months in hospital battling a rare, life-threatening disease.
Now in his Thakeham home and in the care of his mother and father, Emma and Peter Smith, 18-month-old Maxwell will continue to fight the muscle-wasting disorder.
“It’s absolutely lovely to have him home and it’s better for Maxwell too. We can control the people coming in and out of his room and prevent the bugs and viruses,” said Emma.
Born a healthy baby, Maxwell was only nine-months-old when he contracted a bad case of tonsillitis and was admitted to the hospital on November 10, 2012.
After a series of treatments, he was diagnosed with Mitochondrial Disease and is now unable to move his arms or legs and relies on a ventilator 24 hours a day.
Peter said they had been ‘through the mill and back’ in their long journey to bring Maxwell home.
“Some people thought it was best to let him pass away, but we made sure all our choices were right for him,” he said.
Maxwell lives in the dining room of the family home where he has space for his elaborate network of wires, machines and other equipment.
He is eternally connected to a Elisee Resmed ventilator to help him breathe and a tracheostomy with ties, which require changing everyday.
Emma said: “He has an artificial airway and when he’s at home he has to be on a wet circuit, which has a humidifier to survive.”
Mitochondria exists in all our bodies and converts the energy of food molecules into energy. A human can have up to 90 per cent of mitochondria in their cells, but Maxwell only has 30 per cent.
The disease has caused muscle weakness, a respiratory disorder and visual problems, but amid these incapacitating symptoms, Maxwell has managed to learn to say ‘mama’, ‘dada’, ‘yes’ and ‘no’.
Although it is a great feat to have Maxwell at home, Peter said the family are ‘struggling’ with the costs of the baby’s specialist needs.
When Maxwell is taken outside for fresh air his monitor must be kept in a small specialist bag that costs £500.
“This is how crazy our life is at the moment,” said Peter. “We have to pay for equipment that’s not covered by the NHS and it costs a fortune.”
To care for Maxwell full time, Emma has left her current job and is living with Peter in her parents’ home.
To create a safer environment for Maxwell, the couple have submitted an application to convert the garage into a room.
“All we want is a conversion with filtered air and everything clean,” said Peter.
“As Maxwell gets bigger we will need a hoist to help him in the bath tub.”
“He also receives physiotherapy once a month, but it will benefit him more if he gets it once a week,” added Emma.
In a bid to help the Smiths raise the funds needed to meet their target, Thakeham residents have held charity events including Amneh Sheikh-Ali of Amneh’s Beauty Salon, and Andy and James Baron in the London to Brighton cycle (see Page 74).
Emma expressed her gratitude and said the community had been ‘brilliant’ in helping the baby’s cause, which the family have coined ‘Little Maxwell’.
However, the Smiths still require support and donations to help keep Maxwell at home by his family’s side.
If you would like to help out and make a donation, visit littlemaxwell.org, tweet @ littleMaxwell14, or check out the Facebook page ‘Little Maxwell’s Boss Squad’.