Published: 17:42, 26 May 2020
| Updated: 17:53, 26 May 2020
A four-year-old boy who hasn't been able to leave the house since the pandemic hit due to his cystic fibrosis is bouncing his way through lockdown.
Theo Powell, from Tunbridge Wells, has been getting involved in a national challenge - Bounce 4 CF for the Cystic Fibrosis Trust, taking to his trampoline in a dragon costume and bounding around his garden in a yellow sack - the brand colour of the trust.
He is one of 10,500 people in the UK who have the condition which causes thick, sticky mucus to build up in the lungs, and is therefore in the vulnerable group during the coronavirus crisis.
Trampoline sessions are part of Theo's daily exercise and physiotherapy routine, as the movement helps to dislodge the mucus and improve his breathing.
So, encouraged by his parents, Caroline and Laurence, the Nivan Lodge Pre-School pupil decided to also use this as a way to raise money for a cause which the family has been involved in for some time.
Due to Theo's condition, the family have had to stay home since advice for the shielding group was issued by the Government., and do not know when they will be able to go out again.
Rev Powell, vicar at King Charles the Martyr Church priest in charge of St Mark's Church, has been holding services via Zoom and Mrs Powell has been trying to come up with inventive ways to keep Theo entertained during lockdown.
Mrs Powell, 31, said: "Every day gets quite similar but we are trying to mix it up when we can - camping in the garden, building stuff - we're keeping busy."
Although, she says Theo is used to not being allowed out due to frequent hospital trips.
"He's been in hospital quite a lot - he spent a month and a half there in total last year and when he's there, he's not allowed out of the room in case of cross contamination," said Mrs Powell.
Her husband added: "This strict shielding lockdown is a difficult situation for the whole family.
"Theo has just been accepted at the local school but at the moment we are not sure whether he will be able to start with his cohort."
The family are also pushing to get Theo a life-extending therapy called trikafta on the NHS.
Last year, hundreds shared their delight as Orkambi, said to slow decline in lung function, was made widely available after several years of campaigning. However, it does not treat all cystic fibrosis patients, with trikafta helping others whose DNA is not compatible with Orkambi, such as Theo.
In addition, Mrs Powell is working on a separate Instagram campaign, @wearyellow2020, encouraging people to post photos of them wearing yellow in support of Cystic Fibrosis Trust on Friday, June 19.
Along with her friend, Laura Fine, Mrs Powell is running a raffle on the day, with other games and fun activities planning for the week running up to 'wear yellow day'.
More by this authorRebecca Tuffin
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