In a poignant ceremony next week, a bereaved North-East couple will plant a tree to remember the child they lost. Health Editor Barry Nelson tells Matthew's story.

MATTHEW Chad was "a most wanted, precious, beautiful baby with lovely big blue eyes," according to his mum, Tracey. With a wry smile, she jokes that the little boy must have thought his name was "gorgeous" because of the number of times she called him that.

When he was born on June 17 last year, the world was suddenly a much better place for his parents, Tracey, 37, and John, 39.

Routine tests showed Matthew was healthy and he was taken back to the family home in Darlington for the first time.

"Matthew was an absolute joy, he was so easy, easier than I imagined a baby would be," says Tracey. "He was so alert and loved seeing all these different people."

Showing off her new baby to delighted relatives, Tracey says it was the happiest she had ever been, and Matthew delighted his parents when he distinctly said "hello" at just seven weeks. "Thank goodness we have it on tape, otherwise you would never believe it," says Tracey.

The only worry were his legs. Matthew didn't seem to be moving them very much, though a health visitor reassured the couple.

Then, just before he was eight weeks, Tracey's mother-in-law mentioned that Matthew seemed to have a contorted hand. "I hadn't noticed, I was absolutely beside myself with worry," says Tracey.

Dreading the next doctor's appointment, when Matthew was eight weeks old, the couple were told that their baby appeared healthy apart from a poor muscle tone. "The doctor thought the problem would solve itself and that it was probably caused by Matthew being small at birth."

A week later, another problem surfaced. A bump had appeared on the back of Matthew's head and he was not putting on weight. This time the GP was concerned and made an urgent appointment for Matthew to be examined by a paediatrician. "I left the surgery with an awful feeling of dread," recalls Tracey.

Matthew was examined by a specialist at Darlington Memorial Hospital who became so concerned that he asked Tracey to contact her husband and get him to come to the hospital.

"This was the point when our whole world fell apart. He told us Matthew had Spinal Muscular Atrophy and there was no cure. John and I looked at each other in disbelief. We hugged each other as we burst into tears, this wasn't happening, it was a nightmare."

Their much-loved baby had just months, or even weeks, to live.

At that point Matthew went very pale and nurses put an oxygen mask on him. "I thought we were going to lose him then and there, we hadn't even had him christened," says Tracey.

The couple were in total shock. "We were going to lose someone who had changed our lives so much, someone who we should have been allowed to raise and watch grow... and there was nothing we could do."

Tracey, a civil servant, and John, a railway signalman, had never heard of Spinal Muscular Atrophy (SMA) and rapidly set about finding as much as they could. "We didn't have a clue about the disease, although it affects one in 40 of the population," says Tracey.

As they discovered more about this mysterious, incurable disease, they also found out about the Jennifer Trust, a charity founded 20 years ago by Anita Macaulay from Stratford-upon-Avon after her baby daughter, Jennifer, died aged only seven months. The charity campaigns to raise awareness about SMA, funds research and provides support to families up and down the UK.

The couple were put in touch with the Butterwick Hospice in Stockton and a visit was arranged. "They have a sensory room there, which Matthew enjoyed. He even managed to go for a swim on his second visit there," recalls Tracey.

The couple bought helium balloons and fastened them to his pram - he loved watching them. Matthew only lived for two weeks from the day he was diagnosed. "The day before he died he was so bright-eyed and you could tell he was enjoying himself, although he didn't smile," recalls Tracey.

Matthew died on September 22 last year at Darlington Memorial Hospital.

"He was just so peaceful, he looked like he was just asleep."

Tracey says she and John are so grateful for the last memories of Matthew. "All we can hope now is to increase awareness of SMA, so more funds can be raised and a cure found, so that other families don't have to go through such a devastating time."

After Matthew's death, the couple decided they wanted to do something to remember to commemorate his short life. An article in The Northern Echo about the refurbishment of Darlington's South Park and the planting of hundreds of new trees prompted them to contact Paul Place, acting park manager. The Chads had happy memories of pushing young Matthew around the park in his pram.

"Tracey wrote to me asking whether they could plant a tree in Matthew's name. I was very touched," says Paul.

So next Tuesday, weather permitting, the Chads will supervise the planting of a 15 foot semi-mature beech tree which should last for at least another century. There are also plans to commemorate Matthew Chad by dedicating a bench to him and putting is name on a new memorial board inside one of the park's refurbished buildings.

Apart from the tree and bench, the couple are asking people to support the work of the Jennifer Trust by making donations to the Matthew Chad Angel Fund. Jennifer Trust founder, Anita Macaulay says money is desperately needed for medical research to try to find a cure for SMA.

"There is a massive amount of research being done. Some new drugs are already being used in America and we are working on a 14-centre drug trial in Britain which will involve doctors in Newcastle," she says.

Tracey is desperate that other families are spared the same anguish.

"Matthew touched so many lives in such a short time,," she says. "We owe it his memory to do what we can for other children."

* To support the Matthew Chad Angel Fund (associated with The Jennifer Trust) send cheques to The Jennifer Trust, Elta House, Birmingham Road, Stratford Upon Avon, Warwickshire, CV37 0AQ. Tel: 0870 774-361 or visit www.jtsma.org.uk