Press release: 2nd June 2016
Xenia twins urge local community to take the Strawfie Challenge for cystic fibrosis awareness
When Heather Scott and Nathan Young received the diagnosis that their daughter Adriana had cystic fibrosis in 1997, when she was just six-months-old, they had no idea they would shortly be hit with a second devastating shock.
“When I became pregnant again and gave birth to twins Aleeya and Alani they were automatically checked for the disease and were both confirmed as having CF at just six weeks old” said Heather.
The new diagnosis for the twins was a huge blow to both parents. Cystic fibrosis is a life-shortening genetic condition – only half live to celebrate their 40th birthday. It causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.
People with cystic fibrosis are at risk of cross-infection from each other which, with three family members affected, caused complicated treatment issues and remains a huge worry for the family. Inevitably there was a psychological impact on the whole family unit as they adapted to the implications of the joint diagnoses.
“Having more than one child with cystic fibrosis creates the problem of cross infection between the siblings” said Heather “When one child got sick, the others were likely to become unwell too. As well as the worry of cross infection of colds and flu (always more serious for those with CF) people with cystic fibrosis carry bacteria within their lungs that could be harmful to each other.
“The twins in particular have followed very similar paths with their hospitalisations, because they are always together.”
As children, all three siblings were typically hospitalised three to four times a year, creating problems with balancing life between home and hospital.
Having a child with cystic fibrosis means a change of lifestyle for any family as they adapt to the regime of antibiotics, vitamins, physiotherapy, clinic visits and hospitalisations required to keep a person with cystic fibrosis healthy.
The Young family had to go through a huge adjustment to their daily routine to cope with the time-consuming treatment regimes for first Adriana and then later all three children.
However, the family who live in Xenia, Ohio, have learned to cope with the situation and Adriana, Aleeya and Alani have grown into determined and successful young women.
“Despite living with CF, we are honors students. And our older sister is in college” said Aleeya. “We are also on the varsity cheerleading team. We try to live as normal a life as possible and enjoy each day as it comes.”
The twins are keen to raise awareness about CF and have their own YouTube channel ‘It’s a Twin Thing’. In January this year they made an awareness video singing their own version of a song entitled Breathe With Me – Youtube. The video shows footage of Alani and Aleeya carrying out aspects of their daily physiotherapy regime. This includes blowing exercises and the use of a vibrating physiotherapy vest to help break up the mucus in their lungs.
“The song is used for a social media campaign called the ‘Breathe With Me’ Strawfie Challenge” said Alani. “Participants in the Strawfie Challenge have to try breathing through a straw for 60 seconds with their nose pinched. They then take a ‘straw breathing selfie’ (a Strawfie) performing this action, post it online and make a donation to the CF charity of their choice.
“CF is a progressive disease and many people with CF describe their declining lung function as ‘feeling like you are breathing through a straw.’
“The aim of the Strawfie Challenge campaign is to raise awareness about cystic fibrosis and engage new support for fundraising efforts to find improved treatments and eventually a cure.”
“We would love people in our local community and across America to join in with the Strawfie Challenge” said Aleeya. “This campaign is taking place worldwide and we are determined to do our bit to rally people to take part in Ohio.”
“We have already got students at Xenia High School to try the Strawfie Challenge” said Alani. “People were saying how hard it was to breathe in such a restricted way. They said it really opened their eyes to what having cystic fibrosis might be like. The students also donated and we raised $376.00 for the Cystic Fibrosis Foundation.”
Click here to find out more about the ‘Breathe With Me’ Strawfie Challenge. Click here to watch their CF awareness video.
To find out more about cystic fibrosis, please visit: https://www.cff.org/
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