Leeds mum is 'proud every day' of amazing AmÃ©lie in her cystic fibrosis battle
Running around with a grin from ear to ear, inspirational AmÃ©lie McIntyre shows no hint of the deadly disease she battles daily and which will one day likely claim her life.
The youngster, of Morley, was diagnosed as a baby with cystic fibrosis (CF) - a genetic fault which means her cells can’t process salt, leading to the overproduction of thick mucus in her lungs and digestive system.
Her mum, Natasha, 36, told the YEP she is “proud every day” of her brave daughter, who has half an hour of daily gruelling physio - involving mum “pounding” on her little chest to clear her lungs - as well as a cocktail of five different drugs and vitamins.
She also has to go to LGI’s paediatric CF unit every six weeks for check-ups and a ‘cough swab’, to monitor for early signs of infection.
Any coughs or colds Amélie picks up means more drugs and double the physio and exercise to try and keep her lungs clear and prevent anything from becoming more serious.
Last year, to her parents’ horror, she picked up one of the most deadly infections anyone with CF can get, called pseudomonas.
The bacterial infection can lead to pneumonia in CF patients but luckily for Amelie it was caught early and treated with nebulised antibiotics.
Natasha said: “She’s so brave. she just takes it on the chin and gets on with it. I’m proud of her every day. She’s just a normal two-year-old.
“She tantrums, she wants to do what she wants to do. She is cheeky and just a very happy little girl, who makes me laugh.”
Amélie was just three weeks old when Natasha and husband Steven were told she had CF after the newborn heel-prick test.
For Natasha, whose friend at school had died of the condition at 23, she knew first hand what it meant.
“We were absolutely crushed. It was devastating. I cried straight away. My husband took himself off to have a cry,” she said.
Natasha said half of people with CF die before the age of 31 and Amelie’s life expectancy is 40.
“I hope we can keep her well for as long as possible and she can do anything she wants to do. I don’t want CF to hold her back. I don’t want her life to be about CF - I want it to be in the background.
“I hope she doesn’t die before she’s 40. I don’t want to have to bury her. I want her to go to my funeral,” she said.
One of Natasha’s main wishes is for health regulator NICE to approve the funding of a potentially life-changing drug, Orkambi, which she said would mean no more daily physio or drugs from the age of six.
But with Amélie having the most common form of CF, the drug is currently considered too expensive - despite being approved in Scotland and Ireland.
Natasha, who also has 11-month-old Nathaniel, who does not have CF, said the news was “crushing”: “It’s like my daughter’s life isn’t worth it. She’s just been priced out.”
On Monday, Natasha and her family organised a fundraising day at Drighlington ARLFC to raise money and awareness for the Cystic Fibrosis Trust.
It coincided with fundraiser Stephen Taylor, who is currently ‘walking4cf’ from Land’s End to John O’Groats for the charity, dedicating a leg of his journey to Amélie.
Natasha’s ‘toddle4cf’ event at the rugby pitch attracted around 53 people and has so far raised over Â£700.
She said: “It was a fantastic day. I’d like to say a big thank you to everyone who came.”
She also gave particular thanks to Mini Me Time, who held a warm up before the toddle and Little Legs Rugby who held a free taster session.
To fundraise for Amélie visit: https://uk.virginmoneygiving.com/SomeoneSpecial/speckle