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“Nanny, breathe, it’s alright, you can do this!”

Seven-year-old Evie’s desperate plea to her nanny who was administering medication directly into her port.

Can you imagine what it must feel like to have no choice but to inflict pain on the grandchild you’re meant to be hugging? Seven-year-old Evie’s nanny, Deb had stepped in to give her daughter, Lee some much-needed respite. She was beside herself with fear as Deb had to administer medication directly into her grand-daughter’s chest. Her heart broke at the thought of hurting her.

Nanny Deb describes the youngest of her seven grandchildren as “brilliant, resilient and inspiring!” The youngest – and possibly the most spirited of her siblings - the Smith family received Evie’s devastating diagnosis of cystic fibrosis when she was just four weeks old.

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Evie’s mum, Lee, is so proud of her precious child’s resilience.

From the moment she was old enough to understand her condition, Lee says Evie was determined to deal with it her way!

“She’s a fighter with a little bit of sparkle. We’re in awe of her every day. When we were told Evie had a condition that required daily medication and physiotherapy to clear the mucus in her lungs and help her breathe, we were extremely overwhelmed. 

But we quickly learnt what we needed to do to keep Evie healthy. For the next few years, she received her annual hospital tune-up, and all was well until she turned five. We took her for a check-up because her growth had slowed down. She was also finding it harder to breathe.”

With the support from her cystic fibrosis team, after her extended hospital admission in 2019, Evie was granted compassionate access to Trikafta, a medication that isn’t usually available to children under twelve.

This medication has turned her life around. It has built up her strength so she can be well enough to extend the time before she needs a double lung transplant.

The medication has also given Evie and her family the gift this Christmas that should be on no seven-year-old’s list to Santa. Time.

 Your support will give families living with cystic fibrosis the gift of togetherness this Christmas.

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Thanks to our supporters