A local dance company for children and young people, Iconic Street Dance, has raised £600 for the Cystic Fibrosis Trust.
The money was raised through ticket sales for a recent showcase, performed for family and friends at Flowerfield Arts Centre in Portstewart.
Michaela McMichael, Director of Iconic, and her team decided to support the charity after a child with Cystic Fibrosis began dancing with the company earlier this year.
Stella Stewart (age 8) was diagnosed with CF at two weeks old following the heel prick screening test, and was sent to the Royal Victoria Hospital for Sick Children in Belfast. Despite feeding well, her weight had been steadily falling since birth. This is because the thick mucus produced in CF prevents digestive enzymes from acting on food in the bowel, and therefore nutrients (especially fat) are not absorbed. She was started on enzymes with every feed to aid fat absorption, and her parents, Glenn and Emma Stewart, were taught to perform physiotherapy three times a day, to help clear mucus from Stella’s lungs. Stella also began taking antibiotics to prevent infection in the lungs, something she has taken twice a day every day of her life since.
Although the treatment protocols for Cystic Fibrosis have come on leaps and bounds over the past decades, current treatments in the UK are still aimed at managing the symptoms of the condition. This is despite the development of new, precision medicines that target the underlying genetic cause of the disease.
Basically, instead of dealing with the problem of abnormally thick mucus in the body, these drugs help to thin down and ‘normalise’ the mucus that is produced.
One such medicine is Orkambi, which treats the genetic mutation that about half of all people with Cystic Fibrosis have, including Stella!
Orkambi has been shown to slow the progression of CF by 42% and extend life expectancy by several years. It was licensed for use over two years ago, yet those living with CF in the UK still continue to be denied access to this life-saving drug. This is despite it being available elsewhere in the United States, France, Germany, Austria and across the border in Ireland. Clearly, this is completely unacceptable.
In the meantime, Stella will continue to fight to keep her lungs healthy by persevering with her daily treatment regime, and doing lots of dancing with Iconic Street Dance.
The friendly, non-competitive environment at Iconic helps the children to relax, let themselves go, get moving and have loads of fun.
“And anything that makes exercise feel like fun whilst acting as physiotherapy for Stella is a winner by me,” added Emma, Stella’s mum
* Cystic Fibrosis (CF) is a life-threatening and debilitating genetic condition that slowly destroys the lungs and digestive system. The disease affects 10,800 people in the UK and there is no cure, with the current average life-expectancy for someone with CF in the UK being just 47 years.
The condition requires a relentless daily treatment regime including up to 30 tablets, long hours of physiotherapy, and time-consuming nebulisers to stay well and help control the symptoms of the condition.