LIKE any parents Peter and Claire Scanlon eagerly awaited the day their daughter said her first words and took her first steps.

But when at 18 months old, Niamh seemed to getting worse rather than better, the worried couple turned to their doctor.

After eight months the tot, initially thought to have cerebral palsy, was diagnosed with Metachromatic Leuce Dystrophy — a rare genetic disorder which means her brain and nervous system will progressively deteriorate.

Tragically there is no known cure and she is unlikely to reach her fifth birthday.

Niamh, now almost two, has already lost the use of her limbs, cannot speak and has to be fed through a tube in her stomach.

But Peter and Claire, 35, say they are determined to live each day to the full and have launched a fund-raising campaign to give something back to the charities which have helped Niamh.

Peter, 40, said: "She still smiles and she communicates through her eyes. She likes music and people singing to her and cuddles. We want to live each day as it comes and for now we’re channelling our energies into fund-raising."

The couple, who have another daughter, seven-year-old Isabel, are calling on the community to support a car boot sale and ‘Scrapathon’ where people donate scrap metal to raise money.

Benefiting are Francis House Children’s Hospice, Climb which supports youngsters with metabolic diseases, local charity Our Kids Eyes and Salford Diocese.

Members of St Paul’s Church in Ashton recently paid for the family to go on a pilgrimage to Lourdes.

Peter, of Shepley Road, Audenshaw, added: "I work in the refrigeration and air conditioning industry and I know that people in our game have a lot of scrap metal.  What we’re asking is that any company which weighs in scrap metal regularly weigh a percentage for our appeal.  We have been helped immensely by these charities as we carry on living Niamh’s life and we would like to try and help."

The Scrapathon starts on Thursday (25 September). The couple are also holding a car boot sale at the Old Pack Horse pub on Guide Lane, Audenshaw from 9am on 11 October.

Anyone who would like to donate scrap metal, book a pitch at the car boot or help in any other way can contact Peter on 0788 7898487 or can email the family at peterscanlon83@btinternet.com