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“Superstar” tot continues to beat the odds

March 16, 2015

A Bessbrook infant who has beaten the odds to survive past birth with the rare condition Trisomy 13 is the focus of a special fundraiser this Saturday in St.Bronagh’s GAC Rostrevor. The fundraising concert featuring The O’Dubhain Brothers will raise money for one year old Matthew Cartmill and his little friend, 7 month old Patrick Jackson who suffers from quadriplegic cerebral palsy with dystonia.

Speaking to The Examiner ahead of the fundraiser, Matthew’s mum Kerrie Cartmill explains what life has been like since her son was born 5 weeks early last March, and how the condition has affected the little boy she affectionately calls “our superstar.”

Trisomy, which is also known as Patau syndrome, is caused by an extra copy of chromosome 13 in every cell.  This extra genetic material affects the heart, brain, spinal cord, eyes and muscles and causes the baby numerous physical abnormalities as well as severe intellectual disabilities.  Babies with the condition rarely survive long after birth so little Matthew, who is currently the only person in Northern Ireland with Trisomy 13, has already proved his diagnosis wrong as one of only 5 to 10 per cent of children with the condition to live past their first year.

Kerrie recalls how at her twenty week scan she and her husband Stuart were given the frightening news that there was an abnormality on the left side of Matthew’s brain.  The discovery was followed by weekly scans to monitor the baby’s progress before Matthew was born five weeks early by emergency Caesarean.  Doctors immediately knew something was wrong and when he was two days old he was sent for genetic testing to gain a full diagnosis.

“We agreed to the blood test and it came back about three weeks later to say he had Trisomy 13,” says Kerrie.

“’We were terrified when we got the results back as doctors didn’t really explain what it meant for Matthew.”

During the first year of his life, Matthew has spent 170 days in hospital undergoing 7 eye operations for congenital glaucoma and optic disc coloboma and has seen countless paediatricians, neurologists and dietitians.  His condition means he suffers from global, physical, sensory and developmental delay so he has daily appointments which specialists, physiotherapists, speech therapists or for sensory play.

The brave tot is currently on a respiratory monitor to check his breathing, and is taking medication for seizures, iron deficiency and acid reflux.

With their plans as a family turned upside down by Matthew’s condition, 29 year old Kerries has given up her job as a primary school teacher to commit herself to the full-time care of 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.”

Kerrie and husband Stuart have recently started a Just Giving donations page online to raise funds to help them give little Matthew the best quality of life they can.

Explaining why they are reaching out for help, Kerrie says the creation of a sensory room in their own home would help them to cut down on the upheaval caused by having to travel to sensory sessions and create a level of support and freedom for the Cartmill family.

“ We want to raise funds so we can do our sensory play at home and then hopefully in the future do our physio at home too.

“No-one likes asking for help,” admits Kerrie, “but it would be great to be able to do things when he’s in his best form not having to ship him out around the country.”

The condition is so rare doctors do not know what the prognosis will be for the future, but predict that the disease will be severely disabling for little Matthew.

Mr and Mrs Cartmill remain determined to prove everyone wrong, and say Matthew is growing in strength all the time.

‘He’s our superstar. He is developing his own personality now and is so much fun to be around,” says Kerrie.

To donate to Matthew or to keep up with his journey visit the family’s website www.matthewsjourney.co.uk or his Just Giving page www.justgiving.com/matthewsjourney.

To donate to Matthew’s friend, Patrick Jackson’s Just Giving page visit www.justgiving.com/pjsfriends.

The Two Little Boys concert for Matthew and Patrick takes place at 8pm in St.Bronagh’s GAC in Rostrevor.  Tickets cost £10.

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