'We cherish the things he can do'

CARING: Sonja Reid with her son, James, who suffers from spastic quadriplegic cerebral palsy.

When Sonja Reid plays Mumford and Sons' I Will Wait you can see delight in her 5-year-old son's face.

His eyes light up and he moves his arms and head to the beat of the music.

He also enjoys Cat Stevens, Bob Marley and James Blunt but - as much as he would like to - he cannot stand up and dance to his favourite songs.

James has spastic quadriplegic cerebral palsy.

Most patients with the condition cannot walk and their speech is profoundly affected. Their limbs can be extremely stiff, yet their neck is "floppy". Seizures are also common.

James' parents are hoping to raise $150,000 to be able to take their son to America for one of two operations to help relieve the spasticity or high tone in his muscles.

The operations, selectic percutaneous myofascial lengthening, would avoid further contractures (stiffness of muscles and tendons), and reduce the need for further surgeries in the future. It involves small skin incisions, 2-3mm in length, to release tight bands of tendon.

Only two surgeons in the US offer the procedure.

Dealing with James' condition has been an emotional ride for his family.

"The most difficult of times have been watching him endure things ordinary boys his age never have to, such as being hospitalised with emergency and planned stays, having major brain surgery at only 8 weeks of age and living with the constant fear this will happen again. Also the day-to-day reality of having to do exercises to try to get James moving and to stretch out his muscles to avoid further contractures.

"To watch James miss out on so many things he should be doing at his age - like watching him watch other children walk, run, and play with other children when he knows he can't do these things can be heart-breaking."

Motor skills were difficult for James.

"He is unable to crawl, or stand without support, can only take assisted steps and his gait is extremely scissored so finds this very difficult. He can sit independently but his balance is affected so can only do this for a short period of time.

"Cognitively, he is an extremely bright smart and clever boy. I always say what he lacks in movement he makes up for in character and personality.

"So he is relatively on par with his peers, although he does not speak with the same speed of other children, therefore finds it difficult to have a conversation with them. By the time he responds to their questions they have moved on to do something else." Mrs Reid, 38, said her pregnancy was normal until she got to hospital.

She had a quick labour but there were complications.

"I pushed without any progress for basically one hour and a half ... in that time James was in a lot of distress," she said.

When her first child was born he was "purple, floppy and needed to be resuscitated".

James had seizures and was airlifted from Tauranga to Waikato Hospital for specialised care.

An MRI showed he had hydrocephalus, an excess of cerebral spinal fluid on the brain.

"The only thing the neurologists have surmised is that I somehow must have contracted a viral infection such as viral meningitis, which I didn't know about, while pregnant that attacked James' brain in the womb."

At 8 weeks, James had to have brain surgery, to insert a shunt, to relieve the pressure on his brain.

Mrs Reid said they thought they were over the worst when a paediatrician told the family James was showing signs of cerebral palsy.

"Our beautiful little boy who had been through so much already, we thought was going to be fine, when in fact he wasn't fine.

"Every little movement for him from then on was going to be a struggle. It was a huge turning point and we didn't really have time to process how from then on everything was to change.

"However, this journey has also taught us so many things and made us appreciate and value different things in life that you really don't get if you haven't experienced being a parent of these amazingly special little people. We are so blessed to have our wee man and we cherish all the things he can do, that is what we focus on."

Many who meet James instantly notice his sense of humour.

He is a regular at horse riding for the disabled every week and tends to run the show when he's on his horse - telling everyone else what to do.

Also a regular at the beach, he loves going down to the water's edge and watching the waves lap at his feet. Mrs Reid said daily activities which are so easy for everybody else were a huge struggle for James, "but he deals with it and still manages a smile".

-To help get James to America for the operations he needs visit his givealittle page: Team James Whatever It Takes