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ONLY one in 50,000 children is struck by the medical disorder Congenital Hyperinsulinism.

Unfortunately for Marlee Greaves of Korumburra, her number came up.

At just 18 months old, the toddler must take medication every eight hours in an attempt to avoid suffering life-threatening seizures and other complications.

Her little body produces excessive insulin and the medication helps to suppress it. Excessive insulin can rob her blood of the sugar her organs rely on for energy and shut her body down.

But the medication’s side effects can be extreme, causing excess hair growth, fluid retention and even the possibility of changing her facial features.

Despite the significant impacts of the condition, Congenital Hyperinsulinism is rarely known in the medical sphere according to Marlee’s mother Erin Greaves.

“Almost every doctor that we have come across, except for the specialists, has not heard of it, which makes it a bit tricky,” she said.

“I just want to raise awareness of it and raise some money for research, and hopefully save someone from going through a horror story before they get a diagnosis for their child.

“There is no cure for the condition so early diagnosis and treatment are paramount to help to reduce life-long disability from brain damage due to low blood sugars. This is why it is so important to get some awareness out there.”

To increase awareness and collect funds for Congenital Hyperinsulinism research, the Greaves will hold a garage sale on Saturday, February 28 at their Korumburra home at 5 Massimo Way.

The proceeds will go towards Congenital Hyperinsulinsim International’s scientific programs and help the families of fellow sufferers.

The Greaves family battled the impacts of the condition by themselves without the comfort of a support group. Only in the last six months have Erin and husband Steve met two families in Melbourne whose children also endure the condition.

Marlee, it seems, is making the most of her young life.

“Marlee is a really happy kid and even when she has a terrible time she still smiles,” Erin said.

The joy of first time parenthood was shattered just days after Marlee’s birth.

Alarm bells began to sound when Marlee was about to be discharged home from Warragul Hospital. That’s she when turned blue.

“It was horrible, but had it happened half an hour later we could have been stuck in the middle of nowhere,” Erin said.

The family endured a three week stay at the Royal Women’s Hospital before finally being given a diagnosis.

The news came as a surprise after Erin had enjoyed a trouble-free pregnancy and birth.

So specialised is Marlee’s condition, her medication is made by staff at the Royal Children’s Hospital and must be administered every eight hours.

“If she does not take her medication, she could potentially die,” Erin said.

As a baby, Marlee endured heel pricks every few hours to test her blood sugar levels and this process still continues numerous times a day.

Even now, a bout of gastro can put her in hospital, given the devastating impact on her blood sugar levels.

She may face a lifetime of medication – or a life free from Congenital Hyperinsulinism.

“Because she does not have any genetic abnormalities often associated with the condition, the doctors have not ruled out a chance she could grow out of it, but the truth is, no one knows,” Erin said.

To donate goods to the Greaves family’s garage sale, phone Erin on 0413 180 222. To give money, go online to http://www.gofundme.com/l3ddk4 or www.gofundme.com/l3ddk4.

For more information about the garage sale, see the Facebook page: www.facebook.com/events/1532957930325690

Sparkling bright: Marlee Greaves does not let Congenital Hyperinsulinism dampen her spirits. Mum Erin Greaves wants to raise awareness of the extremely rare condition and will hold a garage sale in Korumburra this Saturday, February 28.

Sparkling bright: Marlee Greaves does not let Congenital Hyperinsulinism dampen her spirits. Mum Erin Greaves wants to raise awareness of the extremely rare condition and will hold a garage sale in Korumburra this Saturday, February 28.

Short URL: http://thestar.com.au/?p=13873

Posted by on Feb 24 2015. Filed under Featured. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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