This is a TRUE STORY of an amazing, inspiring young woman who, by prediction of so many MD’s from the very beginning of her life, should not be alive today. Yet she lives. She thrives. And she fights. Not only for her own life, but for the more than 70,000 people worldwide who, like her, live with Cystic Fibrosis. Meet Stacey Daniels. Everyone has challenges. No matter what your challenges in life are, we can all learn from Stacey’s life and example. She says: ‘I thank God every day for the many blessings I’ve been granted through my journey of faith and hope. Those are two things I grasp onto and can never let go. No matter how grim the future may look, I know I have a million reasons to live. That’s what keeps me going. Live a life of gratitude. That’s the secret to a survivor’s attitude.’
Reaching the age of 30 is a big milestone for someone with CF. Many don’t make it that far. But last week, at the Great Strides event, Stacey received received her 30+ Medal. They hand those out to people with CF who reach that big milestone. Yet I know, as happy an event that is for Stacey, it must have been bittersweet; I know how many friends she’s lost who didn’t make it that far in the years I’ve been friends with her Mom (in the picture above) and so followed Stacey’s journey.
Approximately 1,000 new cases of CF are diagnosed each year.
Stacey describes ages 21-26 as a blur. At age 24, she was diagnosed with end stage CF. Dr’s told her her only option was a nursing home ‘to provide a comfortable transition to the next life.’ She said it felt like everyone had given up on her. During those years from her early to middle 20’s she had to be revived many times. She hung on. The 3rd time she was brought back from respiratory arrest, she came back changed. Something had happened–she found hope. She decided she was going to fight. She was going to live. She fired her old Dr’s. She began a workout program, she researched. She changed how she ate. She did whatever it took, no matter how tired she was or how badly she felt, to get stronger, better.
She fought ‘tooth and nail’ to be accepted at a new clinic that offered more hope, even though it meant traveling a good distance away. There, she proved to the new Dr’s and staff that she was so much more than her medical history and paperwork described. She fought to show them she had what it took. Despite the previous MD’s giving up on her, the new clinic recognized all the hard work she’d done and welcomed her, believed in her despite that end-stage diagnosis her old Dr’s had written in her charts. She went from a team that had NO belief in her survival, from Dr’s and staff who’d treated her as a statistic, to a team that respected her spirit, her beliefs, and her willingness to work hard. They treated her as an individual with personalized needs. They believed in her and she said that made all the difference in her life.
She became a warrior. For herself and for others fighting CF. She remembered how alone she felt and began using social media to help others. She opened her life to give other hope via her Facebook Page called Cystic Fibrosis Warriors. She shares her story, stories of others, a lot of great information, answers questions, and offers guidance and support for CF patients, families, and friends.
She got involved with the Great Strides to CURE Cystic Fibrosis program, the Cystic Fibrosis Foundation’s largest national fundraising event with walks in nearly 500 cities nationwide welcoming more than 125,000 striders to support the mission to cure CF. She gained weight. She got stronger. She found the love of her life and got married. For a gal who was told just a few years before that her only option was a nursing home ‘to provide a comfortable transition to the next life,’ she continues to prove those old Dr’s wrong and lives life as full as she can. From a once-shy girl who felt isolated and tired to hide her disease she now advocates, fund raises, and conquered her fear of speaking to crowds. May is National Cystic Fibrosis Awareness Month and she’s doing her part as one of thousands of volunteers who are raising awareness about this devastating disease and tell their story of hope and progress. She’s been rocking that daily on her Cystic Fibrosis Warriors page, walked AND TALKED in the Great Strides Paducah event, where she was honored not only for actually making it to age 30 but for surpassing her fundraising goal!
So I’m going to ask you, dear readers to do two things:
#1– Please VOTE for Stacey to be #CFWorkoutWarrior of the year! Click the link, find this photo of her (below) & VOTE! You can vote every day! It’s taken her a LOT of work to get from where she was just a few years ago to now. About 6 years ago, her lung function was between 8 and 12%. Today, it is 36%. Stacey puts herself out into the world to inspire others with Cystic Fibrosis with videos of her in the hospital, of her workouts, she shares her good days and bad, she talks truth and gives of herself and her life experience unabashedly to help others cope with this terrible disease. She’s made a commitment to help others and to lead by example and she’s sure following through on that. So please–take a minute to VOTE for STACEY to be #CFWorkoutWarrior of the year!
Click the link in the blog!
#2– And I do have Stacey’s Mom’s blessing on this. We all know Stacey’s going to need a lung transplant one of these days, sooner than later. She’s watched friends get them and live, others get them and die. She continues to give to her community. From her excellent article on lung transplant on her Cystic Fibrosis Warriors page: ‘people often misunderstand is that transplant is not a cure, an easy fix, or even a guarantee of a healthier life.
.. With transplant there are many risks that include: death (the surgery itself is complicated and risky), rejection (when transplanted tissue is rejected by the recipient’s immune system, which destroys the transplanted tissue), increased risk of cancer due to immunosuppressants (medicines to reduce risk of rejection by suppressing the immune system), a lifetime of many more medicines than before, and so on.
Lung transplant does resolve Cystic Fibrosis symptoms in our lungs. It does not cure us of CF! There is a chance of returning symptoms if our sinuses are contaminated by the bacteria that grew in our CF lungs. The infection can easily move back into our lungs. We still have CF and the rest of our body is still affected!
Despite all of these concerns, we muster up the courage to take the chance and fight the odds when our disease progresses to the point of no return…
‘…Transplant is a monumental financial burden. Some insurance will pay a percentage. Some will pay more than others. Generally, hospitals require you have 12-15k readily available to cover copay. This can be misleading because, without insurance to cover the larger part of the financial burden, it cost hundreds of thousands of dollars. This is why many of us have to set up gofundmes and put on fundraisers. I can’t tell you how many patients I know that have lost their life while waiting to gather these funds. It is such a heart-breaking situation. There are no words to suffice…’
Stacey has a fundraising page set up for what we all know it inevitable: they’re planning for the future—which with CF patients can really come at any time! And the truth is, Stacey herself is so involved in helping others, she does not share her own fundraiser half often enough. Her mother sometimes shares it.
So I’m asking you for them: if you have even a few bucks you can share–won’t you put a little in to help Stacey get new lungs when she needs them? We want to keep her alive as long as we can! Sure there are risks, but it can give this fighting spirit a chance at many more years of life!
And she’s got SO much to live for! Sure she sometimes needs to carry an oxygen tank on her back, but she’s got so much LOVE for LIFE and then there’s the LOVE of her LIFE to LIVE FOR! So give if you can, and if you’re having a hard time financially yourself, please SHARE her fundraiser with everyone you know. You can just cut & paste this link into your e-mails and social media https://www.youcaring.com/staceyburgessdaniels-876182
Thank you and BLESS you for helping.
This fiercely independent woman who’s found life worth fighting for and a love worth living for has so much more to give! She is truly one of my heroes and inspirations!
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