'My beautiful son is slowly fading away'

Noah and his family.

Noah and his family.

Kat and Mark Barlow are living every parent’s worst nightmare.

They are being forced to watch their bubbly two-and-a-half year old son Noah “slowly fade away”, as Kat puts it. Noah was born premature at 29 weeks on May 15, 2010. He weighed just 1090 grams, fitting in the palm of his father’s hand.

He stayed in hospital for a further 51 days after his birth before his parents took him home to Bacchus Marsh in regional Victoria.

Noah had gastrointestinal issues from the day he was born, but doctors put that down to his premature birth.

Kat knew there was more to it. When his parents tried to start feeding him solid food, he would vomit and become violently ill before passing out.

The worried parents were told on a number of occasions that Noah had gastro, but after a cycle of this reoccurring again and again, Kat demanded answers.

The long list of conditions he has been diagnosed with include Food Protein-Induced Enterocolitis Syndrome, a gastrointestinal and immune response to particular food proteins, fructose malabsorption, multiple protein intolerance and Sensory Processing Disorder. This combination of illnesses means that Noah is unable to eat and is fed a formula via a tube every three hours.

Just prior to Noah’s second birthday, the sprightly toddler began to have multiple seizures and walking became a struggle. Sadly, it was later revealed he has extensive brain damage to the part of his brain that controls vital functions including breathing, blood pressure, heart function, swallowing, appetite, body temperature and digestion. He also had a transient ischemic attack (a mini stroke) recently.

Noah’s health issues have baffled dozens of doctors. The hardest part for Kat is not knowing how long she has with the little boy who lights up a room with his cheeky grin, love of rainbows and trucks and a maturity that makes his mother believe he is an “old soul.”

He also loves animals and reading books, with many conversations revolving around lions, tigers and kangaroos. Kat said her son constantly made her laugh. “The other morning I went into his room to wake him up and he asked if we were going to have a busy day. When I told him we were, he said ‘I think I need a coffee’.”

Leave a message of support for Noah and his family on Connect Pink, where regional women come together.

Kat and Mark are determined to enjoy every precious minute with their son, whose zest for life is infectious. 

They regularly visit the Melbourne Zoo and hope to visit Australia Zoo at some point. Kat said that she had been overwhelmed by the support of people touched by Noah’s story.

Originally from Bolton in the UK, Kat said the level of support the family had received was just one more reason why she loves the country she now calls home. “Australians rock,” she said. “They really are amazing. It is truly overwhelming how much support we have received.”

Kat said Noah loved to visit the park every day. On good days he will be up and down the slide, with help from his parents, while on days when he is not feeling his best he is happy to sit in the sandpit. The medical bills have been a huge strain on the family, with Noah regularly seeing about 14 different specialists.

Kat said she was left speechless when the Bacchus Marsh community hosted a community fund-raiser that netted at total of $13,500 for the family.

If you would like to help the family, you can make a donation to Noah’s paypal account noahbarlow@live.com

If you would like to follow his progress visit http://www.facebook.com/noahbarlow2010

Check out this video of Kat and Noah when they appeared on Sunrise.