The photographs show Kerrie  Cartmill gazing down at her tiny newborn son, who is nuzzled into her chest. Though little bigger than a bag of sugar and surrounded by tubes and wires, he is sleeping peacefully. But while the picture is one of serenity, the pictures marked a frightening time for Mrs Cartmill and her husband Stuart. Their son's health was deteriorating rapidly, and they knew these precious days could be the only time they would ever have with their him. Kerrie and Stuart Cartmill are seen (left and right) cradling their newborn son Matthew to their chests. He was born with a rare condition which sees 90 per cent of babies die within the first five days of their lives . Matthew was born with Trisomy 13, a rare chromosomal disorder which cause multiple congenital abnormalities which result in severe physical and mental impairment . Matthew, from Newry, Northern Ireland, suffers from a rare condition called Trisomy 13, which sees 90 per cent of babies die within the first five days of their lives. Incredibly, Matthew beat the odds and has lived to see his first birthday, a milestone doctors feared he might never reach. Trisomy 13 is a chromosomal disorder which can lead to multiple congenital abnormalities which result in severe physical and mental impairment. It affects only one in 16,000 births, and it is so rare that Matthew is currently the only person in Northern Ireland with the condition. In the first year of his life, he spent 170 days in hospital and has had medical appointments every day. His family have committed themselves to caring for their only child and Mrs Cartmill, 29, gave up her job as a primary school teacher to care for her son. She said: 'We've all had such a tough year and Matthew has spent nearly half of his life in hospital. But we are now looking to give him more stability and a routine at home. Trisomy 13, or Patau syndrom, is a chromosomal abnormality caused by an extra copy of chromosome 13 in every cell. The condition causes multiple congenital abnormalities which result in severe physical and mental impairment. It occurs in  one in 16,000 live births and is the third most common autosomal trisomy in newborns. A couple are more at risk of having a child with the condition if they have a family history of the condition, risk also rises with maternal age. Many babies with Trisomy 13 are stillborn or die within the first few days after being born - the life expectancy of affected babies is just 2.5 days. About 50 per cent of babies survive for longer than a week and only five to ten per cent survive for longer than a year. Features of the condition include, low birth weight, heart defects, facial defects, severe learning difficulties, problems controlling breathing, deafness, hernias, polycystic kidneys and abnormal hands and feet. 'Our plans as a family have changed as we give Matthew every bit of our time and energy. We don't know what the future holds, we just take every day as it comes.' During the pregnancy, Mr and Mrs Cartmill refused genetic testing because of the risk of miscarriage - and say they knew that whatever happened, it would not have changed their minds about going ahead with the pregnancy. Immediately after Matthew was born, five weeks early by an emergency Caesarean, doctors knew something was wrong. He was sent for genetic testing when he was two days old, and three weeks later the family found out he had Trisomy 13. Mrs Cartmill said: 'We were terrified when we got the results back as doctors didn’t really explain what it meant for Matthew.' They explained that Trisomy, which is also known as Patau syndrome, is caused by an extra copy of chromosome 13 in every cell. The condition affects the heart, brain, spinal cord, eyes and muscles and causes the sufferer numerous physical abnormalities as well as severe intellectual disabilities. For the first year of his life, Matthew saw paediatricians, neurologists and dietitians almost every day. He still has daily appointments which can sometimes be with a specialist, or for physiotherapy,  speech therapy or sensory play. He is currently on a respiratory monitor to check his breathing, and is taking medication for seizures, iron deficiency and acid reflux. He also suffers from a defect to his optic nerve, which causes problems with his vision, and he has regular eye appointments. The family have just celebrated Matthew's first birthday, a milestone doctors feared he would never reach . Matthew's parents say their son, who has sensory and developmental delays, as well as problems with his vision, is growing in strength. His parents have started fundraising for sensory toys to aid his development . But despite his ongoing medical problems, he  is one of only 5 to 10 per cent of children with the condition to live past their first year. The condition is so rare doctors do not know what the prognosis will be for the future, but stress that the disease is severely disabling. But Mr and Mrs Cartmill are determined to prove everyone wrong, and say Matthew is growing in strength all the time. She said: 'He's our superstar. He is developing his own personality now and is so much fun to be around. 'Now Matthew has reached one we just want to cut down the travelling round the country and give Matthew a better quality of life.' Matthew still has daily appointments for physiotherapy, speech therapy or sensory play . The family have been overwhelmed by the outpouring of love and support from the community and have started fundraising for sensory toys to aid his development. They are hoping the toys will add much needed normality to Matthew's life and give him something to look forward to. Mrs Cartmill said: 'Our consultant is happy that he is stable at the moment and has given us the go ahead to be more physical with him. 'We have stepped up Matthew's physio and are already seeing positive signs. 'We hope to have sensory toys so that Matthew can enjoy play like every other baby.' To donate to Matthew or to keep up with his journey visit the family's website or his Just Giving page.
Matthew Cartmill was born with Trisomy 13, a chromosomal disorder . The condition is caused by an extra chromosome 13 in every cell . Causes  congenital defects which lead to physical and mental impairment . Only 5 to 10 per cent  of babies with the condition live to a year old . Celebrated his first birthday - landmark doctors feared he wouldn't reach . Condition is so rare doctors cannot say what the prognosis for the future is .