Tamworth cystic fibrosis awareness: two mums selling roses for 65 Roses Day on May 28

This is because Tara Bartlett and Jo Jones both have a child with the condition, and they're hoping to raise awareness through the annual 65 Roses Day.

They've rallied together to sell single-stem roses for $5 each to go to Cystic Fibrosis Community Care (CFCC) while also sharing three-year-old Jesse and seven-year-old Lexi's story.

According to CFCC, the condition causes an abnormal build-up of thick and sticky mucus in the lungs, airways and digestive system. Treatment requires intensive daily physiotherapy to clear the lungs and airways, countless medications and frequent hospitalisations.

Both parents of a child with cystic fibrosis have to carry the gene, and it's a 25 per cent chance every time they have a child that they might pass it on.

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Mrs Bartlett is mum to Lexi, who was diagnosed with cystic fibrosis (CF) at just two weeks old.

She said it was a "very lonely existence" as children with CF couldn't meet up, for fear of cross infection.

"It's hard to find parents who are in a similar situation living in the country that has a kid with CF because you can't associate with each other," she said.

CFCC flew a representative to Tamworth to help Lexi's teachers at preschool and school learn more about the condition, and provide online modules to complete.

"Through CFCC Lexi was able to have access to a grant to help with the cost of gymnastics classes to help keep her active, providing her with a year's worth of classes. It was absolutely amazing to have this available," she said.

"There are grants to help people with the cost of respiratory equipment and access to family holidays to provide respite. There is also programs available for siblings of kids who have CF."

Lexi takes tablets when she eats meals, and so does Ms Jones' son Jesse.

He can't eat or drink anything with fat in it, unless he has an enzyme tablet. This is basically everything but fruit and veg, his mum said.

"Depending on how much fat is in what he eats, depends on how many enzyme tablets he has," Ms Jones told the Leader.

"They have to eat twice the amount of calories in a day to what somebody normally would for someone their age without CF.

"For example, at breakfast he has one cup of milk, weet-bix, and some cream, which is three capsules."

Both Jesse and Lexi take orkambi - which to Ms Jones "is not a cure but at the moment it's the closest thing to it".

"It treats the underlying cause of CF," she explained.

She's hoping there may be a cure for the condition someday.

"With all the new research I hope there's a bright new future out there so that can happen," Ms Jones said.

Mrs Bartlett and Ms Jones will be set up inside of Tamworth Square on May 28 selling the roses.

For more information or to pre-order a rose, visit the Facebook event the ladies have set up.

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