Aimee Barclay’s daughter Savannah has been diagnosed with mastocytosis and there is only one doctor in the state who specialises in it. She speaks out so others will become more aware of this disease.
Aimee Barclay’s daughter Savannah has been diagnosed with mastocytosis and there is only one doctor in the state who specialises in it. She speaks out so others will become more aware of this disease. Tony Martin

Savannah’s disease can make everyday seem ‘scary’

EVERY day is scary for Aimee Barclay.

Her 14-month-old daughter, Savannah, has been diagnosed with a rare disease called mastocytosis.

This meant her body produced too many "mast cells" in her white blood cells and she could react and go into anaphylactic shock with "anything and everything", Ms Barclay said.

Simple pleasures like eating certain food, being outside or around animals, even a hot day could all cause little Savannah to have a severe reaction, she said.

Her little girl had about 30 to 40 lesions over her body and couldn't even be in the sun for more than 15 minutes because she would turn red and her lesions would blister up, Ms Barclay said.

The first six months of her life were incredibly scary for the single mum.

"Basically, I just stay at home and try to keep her as comfortable as possible," she said.

Her little girl was on three different type of medication to help reduce the number of reactions she had, Ms Barclay said.

One of the medications had to be imported from the US and compounded on at a pharmacy on the Gold Coast before being sent to Mackay.

Ms Barclay said this medication was "life-saving" because it helped to reduce the number of Savannah's reactions.

Savannah was also on an "elimination diet" so Ms Barclay was only able to introduce certain foods one at a time "and only healthy, fresh food".

It was emotionally and financially exhausting at times, she said. But her family, friends and the George St Neighbourhood Centre had been a wonderful support.

Rare Disease Day

  •  Rare Disease Day is tomorrow, February 28
  •  First launched in 2008, the main aim is to raise awareness within the community about rare diseases and how they impact families.
  •  More information can be found at http://www.rarediseaseday.org

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