Hello Friends and Family,
As the world is starting to resemble normal again, fewer masks, in-person activities, lots more hugs, and feeling we can relax a bit, those living with Cystic Fibrosis still have to live more cautiously.
Our brother/Uncle Michael and nieces/cousins Frankie (4 yrs) and Cora (8 months) living with CF continue to fight daily for their health.
They endure hours of breathing treatments, hundreds of pills, and a constant risk of lung infections which can lead to hospitalizations. Their digestion is greatly impacted as well; Frankie has a feeding tube to meet her high caloric needs and Cora has needed two major abdominal surgeries to correct harm caused by her disease. While those with CF may 'look healthy,' there is a battle raging inside the body which demands constant effort to prevent the disease from taking over.
There is still work to be done, and we see so much hope. Now, due to the efforts of the CF Foundation, half of those born with CF are expected to live until age 50. While we celebrate these advances and the efforts of those before us, we will not be satisfied until there is a CURE for all those with CF.
This is an exciting time for CF research. There are several medications on the market that correct the underlying genetic defect caused by the disease, and we're hoping one is approved for Frankie's and Cora's age soon. But, because CF is a rare disease, the CF Foundation gets no government funding and relies solely on private donations to fund research. Your donation today not only helps our nieces/cousins gain access to improved treatments and a longer life -- it also furthers the Foundation's groundbreaking research which will benefit other genetic diseases and advance medical technology for all.
It's always a little hard to ask, but if you are able to help, please consider a donation to support Frankie and Cora and all those with CF. Living apart from them makes it difficult for us to help the family with their daily fight to stay healthy, but when we can actively be involved in the fight for a cure, we feel helpful!
The Tustin Tullys will stride until CF stands for Cure Found!
If you can, please join us by making a donation to make a difference.
From the bottom of our hearts, we thank you for your love and generosity!
Sean, Kerry, Keeley, and Payton