Baby diagnosed with ultra-rare condition can only get fortnightly treatment hundreds of kilometres away
"What's the life expectancy for my child?"
It was the question Melissa Norton never thought she would have to ask.
A routine GP appointment with her son Henry, who had a slight cold and some teething issues, led to him being diagnosed with an ultra-rare disease that affects just one in five million.
The family live on a farm outside Albury, about four hours from the nearest hospital that offers the treatment needed, and now find themselves making a fortnightly journey to protect their child.
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Henry has been diagnosed with disease affecting just one in five million. Nine
"Our lives have completely changed over the past few weeks and it really hasn't hit home," Norton told 9news.com.au.
"I don't think it will until we start that new normal life."
Henry lives with atypical haemolytic uremic syndrome (aHUS), which has caused abnormal blood clots to form in small blood vessels in the kidneys.
It can occur at any age, and the clots can cause serious medical issues if they restrict or block blood flow.
The life expectancy can be low for untreated patients but can be managed by an infusion at the Royal Children's Hospital.
He will most likely require this treatment for the rest of his life.
Norton is now unable to work as she becomes Henry's full-time carer, while also looking after her toddler, Lachlan.
"I am unable to work because Henry can't get sick at all," the mother said.
"If he has a temperature, rash or headache, we have to take him to emergency."
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The eight month-year-old was flown to Melbourne's Royal Children's Hospital, placed into a coma and diagnosed with a rare disease affecting just one in five million. Nine
"It will be like this for the foreseeable future.
"This will be our second home."
Husband Craig Norton works full-time as a leading hand at Boral Quarries and has also been forced to take a leave of absence.
"It's been quite challenging," she said.
"We are still learning about it all and getting around all the changes that will happen in our lives."
Henry also lives with x-linked stapes gusher syndrome, which means his atypical shaped cochlear has made him profoundly deaf.
They are currently in the process of finding out if Henry is eligible for a cochlear implant.
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Henry was placed into a coma and diagnosed with a rare disease affecting just one in five million. Nine
"Both of these illnesses have caused a great impact on Henry's and our lives," Norton said.
The family have headed home this week for the first time in weeks to prepare for what's next.
"We will come back to Melbourne next week for his next infusion and we will continue to do so fortnightly," Norton said.
"We just need to be careful Henry doesn't get sick in the way of a cold or flu, anything that can compromise his immunity.
"If he gets a flare-up in the meantime, it will lead us back to the hospital."
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Melissa, husband Craig and eight month-year-old Henry in hospital. Nine
For Henry, it might be a challenging road ahead, but he is currently in good spirits.
"He has turned the corner in the past couple of days," Norton said.
"He's incredible today, he is all smiles."
The Norton family have set up an online fundraising page to assist with the financial cost.
"We really don't like asking for help but we are seeking some support financially to assist," the mother-of-two said.
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