A mum is helping to raise awareness of her five-year-old daughter’s life-limiting condition by posting eye-opening videos on social media.
Ava, from Great Cornard, near Sudbury, suffers with the genetic condition cystic fibrosis, which affects the lungs and places the sufferer at an increased risk of infection.
To generate greater awareness of the regime of medication, nebulisers and physiotherapy that Ava undertakes her mum Emily Wicks has started posting videos on Instagram that have reduced some to “tears”.
Ava’s dad David Jarvis, a manager at Sainsbury’s in Colchester, is also raising awareness of the condition through a charity sky dive in July in aid of the Cystic Fibrosis Trust charity.
Miss Wicks said a lot of people had shown an interest in her Instagram posts, many which feature Ava and reveal how her condition is managed on a daily basis.
“Two weeks ago I thought ‘no-one really knows anything about it’. I started doing Instagram videos showing what Ava has to take, how much, what time we have to get up before school and people were messaging and saying they didn’t know what Ava has to go through.”
Miss Wicks, 25, who also has 10-month-old Chester, said it can take an hour and a half in the morning to get through Ava’s physiotherapy, nebuliser, creon medication and antibiotics.
“She doesn’t let it bother her in the slightest. She’s just so brave and so good with everything,” she said.
Ava is still able to enjoy her life like any other five-year-old child, said her mum, adding she hasn’t had an overnight hospital stay for about more than two years.
She is an active little girl who loves swimming and her sports club - “the more active she is the better,” her dad said.
The family do have to be vigilant about coughs and colds, which could lead to serious complications for someone like Ava.
“We are on it a little bit more,” said Mr Jarvis.
What is cystic fibrosis and how is it diagnosed?
The couple are both carriers of the faulty gene that causes cystic fibrosis, but they didn’t know this before they had Ava. Chester does not have the condition.
Mr Jarvis said Ava’s diagnosis at six weeks old came about from her newborn heel prick test, that looks for several serious but rare conditions including cystic fibrosis.
The gene affected by cystic fibrosis controls the movement of salt and water in and out of cells. Sufferers experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.
A recent report, based on people with the condition, who are recorded as alive 2013-2017, says half of people born with cystic fibrosis in 2017 would live to at least 47.
But the Cystic Fibrosis Trust says this figure does not necessarily account for significant advances in care, including new treatments that are being developed.
For more information about cystic fibrosis see here.
The sky dive
Mr Jarvis is hoping the sky dive at Beccles on Sunday, July 7, will raise £500, but he will be “over the moon” if he receives more.
To donate see here.
To follow Miss Wicks on Instagram search for ‘emilylouise1593’
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