A little girl with cystic fibrosis whose lungs were functioning at just two thirds of their capacity is fighting fit again after enduring years of coughing fits and a weakened immune system linked to her condition. Harriet Corr, seven, suffered weight loss and even had to have a port fitted in her chest to pump drugs into her body more quickly.
Seeing her child suffering led concerned mum Emma Corr, 42 to look into medication that would help ease her little girl's condition. Over the course of seven years, Emma campaigned to be granted access to the drug Orkambi which is available in the US.
Emma teamed up with a group of parents whose children have cystic fibrosis, to lobby the government to get the drug available on the NHS. Their first victory was when Orkambi was made available in October 2019 and then another drug, Kaftrio, was also green-lit in February 2022.
As soon as Harriet started taking the drug in February 2022, there was an "overnight" transformation in her health. The schoolgirl is now able to run around and keep up with other children her age, has gained weight and no longer is kept up all night coughing.
Her lung capacity is now 120% after plummeting to a frightening 67% at her worst. Emma, a teacher, from Hebburn, Tyne and Wear, said: “It’s not an exaggeration to say I didn’t sleep for the first seven years of Harriet’s life.
“I would sit up all night by her side as she would cough. Campaigning to get the wonder drugs available on the NHS is what pushed me through, as I would email MPs throughout the night.
“I get scared speaking about it in case I jinx it. But it is absolutely amazing to see how far Harriet has come from this time last year.”
Before starting Kaftrio, Harriet, whose immune system was compromised, shielded throughout consecutive Covid lockdowns and was kept safe from colds and bugs outside. She was put on Orkambi in October 2019 which was said to improve her health slightly but not miraculously.
In August 2021, Harriet’s health was at an all-time low. Her lung capacity had plummeted to 67% and her parents were petrified when she struggled to breathe and was admitted to Newcastle City Hospital.
Emma said: “It was terrifying and absolutely horrendous. Her health plummeted so low she had to have a port fitted into her chest so they could pump more drugs into her body more quickly."
The little girl also had to be put onto calorific milkshakes to gain weight. Since starting on the Kaftrio drug, Harriet’s health is said to have transformed overnight.
On the first night she took the tablets, Emma woke up to her daughter crying. Emma said: "Harriet called out 'Mum I’m frightened, it feels different.'"
Emma was anxious that the 'miracle' drug hadn’t worked, but the cough was different. Emma said: “She coughed for 10 minutes and then never coughed again.
“Harriet is now like a new little girl, looking back at photos the transformation is phenomenal.” Her older sister, Nancy, 10, loves having her sister back as she used to miss her when she was hospitalised for long periods of time.
“She no longer has to drink the weight-gaining milkshakes and her physio is decreasing," Emma said. Before starting the treatment, even a common cold could result in a hospital visit, but now she can fight illnesses like any other person.
“She can sleep through the night and her older sister is so happy to have her little sister back. She’s a really big fun character and loves to be the centre of attention.
“She used to struggle with her coughing whilst dancing, swimming and playing football, but now nothing is holding her back.”
