School day helps in quest for disease cure

Tamara Robins with Noah (9).
Tamara Robins with Noah (9).

The nine-year-old was diagnosed at two-and-a-half-years old with Leigh’s Disease, a form of Mitochondrial Disease (mito), which is a rare inherited neurometabolic disorder affecting the central nervous system.

Mrs Robins said she knew something was wrong with Noah when he wasn’t meeting milestones like his twin brother Harrison.

‘Noah was a very colicky baby; he was very hard to settle and cried a lot,’ she said.

‘Whereas Harrison was sitting up, cruising furniture and walking at nine and a half months, Noah could barely sit up.

‘He had very poor balance and motor skills ” it was heartbreaking just to see him struggle to try and sit.’

Mrs Robins said after Noah was diagnosed, their lives changed immensely.

‘We have this dreadful disease that has robbed our beautiful boy of a normal childhood and life,’ she said.

‘He faces so many struggles and hurdles in life because of this.’

In an effort to raise awareness of the disease, Noah’s school, Burbridge primary in Koondoola, held a pyjama day on Friday to raise money for the Australian Mitochondrial Disease Foundation as part of the National Stay in Bed Day campaign.

Mrs Robins said some mito sufferers didn’t have enough energy to get themselves out of bed.

‘Noah’s disease is incredibly serious and degenerative,’ she said.

‘We worry about the consequences of this disease constantly. We try not to dwell on this though and give Noah every opportunity to participate in every-day activities like healthy children.

‘We need to be positive for our son, keep him healthy and keep praying for a miracle ” treatment for a cure.’