As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living with the condition.
Both girls and their older sister have CF and to help the community, they make their own Youtube videos motivating others to get involved!
Aleeya and Alani were diagnosed with CF at six weeks old. Because their older sister Adriana was diagnosed at six months old, doctors were quick to check the girls for the condition.
When asked about her daily life with CF, Aleeya explains “All three of us take respiratory clearance every day. We do this twice a day on busy days and three times a day on slow days. These “treatments” are twenty minutes long. We also take up to 30 pills every day. We have frequent hospital checkups and hospital stays for two to three weeks once or twice a year.”
To the average person, it might be hard to understand making such a huge time commitment to these treatments each day. But when you live with a chronic and painful condition such as CF, the treatments are worth it to control the symptoms and improve quality of life. The Strawfie Challenge and this Ohio family are seeking to facilitate a better understanding of dealing with CF.
“We hope to spread as much awareness as possible. We also hope for people to get a bit more of an understanding of how serious and life-threatening this disease actually is,” Aleeya explains.
“No one will ever understand how hard this disease is unless you have it, but we are willing to help you get as close to an understanding as possible.”
Outside of their regular treatments, the girls are also embarking on a very similar concept Patient Worthy has written about in regards to a recent CysticLife effort: frequent exercise.
“We try to stay active even when it gets hard (we don’t feel very well). We plan on working hard to stay as healthy as possible to benefit us now and in the future,” says Aleeya.
Their diligence in treatment and healthy lifestyle, in addition to their efforts in spreading awareness in hopes for finding better cystic fibrosis treatments, Aleeya, Alani and Adriana have bright futures ahead of them. Although she has much to look forward to, Aleeya has a very clear message that reflects the adversity CF presents:
“You never know how strong you are until being strong is your only option… Live every day like it’s your last, because you never know when it’s going to be.”
