Це відео не доступне.
Перепрошуємо.
EMOTIONAL INTERVIEW | My Cystic Fibrosis Journey
Вставка
- Опубліковано 14 кві 2021
- This interview was originally filmed for Emily's Entourage, learn more about them here: www.emilysento...
Visit our Online Store → thefreylife.com...
Yesterday's Vlog → • How We Make Money on Y...
Welcome to The Frey Life daily vlogs! We are Peter & Mary, a married couple in our early 30's, showing the ups and downs of everyday life with #CysticFibrosis, a life-threatening lung disease that Mary was born with. We have an adorable standard poodle, Oliver, and a hairless sphynx cat, Harry. It's our hope that these videos can be an encouragement to to celebrate the little things in life and find joy amidst a world full of hard realities!
Check out our weekly podcast on Peter's Channel about faith and living with hope in Jesus in the midst of a broken world! → / livingwithhopepodcast
Want a personalized video message from Mary & Peter?!? You can request a Cameo here! → www.cameo.com/...
Our vlogging camera (affiliate link) ↓↓↓
Canon G7X Mark ii → amzn.to/3jnv7mq
Other affiliate deals for things we love! ↓↓↓
Ibotta ($10 signup bonus) → ibotta.com/r/n...
Rakuten ($20 signup bonus) → www.rakuten.co...
Shop our Amazon Favorites → www.amazon.com...
↓↓↓ Follow us on social media! ↓↓↓
Mary's Instagram → / freyliving
Peter's Instagram → / peterfreylife
Our Store Instagram → / thefreylife
Twitter → / thefreylife
Google+ → google.com/+the...
Facebook → / thefreylife
We wanted to share this footage from a few months ago. If you are feeling unseen or alone, I hope this can help you feel less alone in the journey.
God is so good the timing ⏱ of this video renewed my hope & that I am not unseen from a fellow Multiple Sclerosis Warrior hugs & love God Bless you
You are so amazing Mary and inspiring. I will never stop watching your videos . You taught me to choose joy over negativity. Thank you for being you.
Much love
Megan Volz
I am so grateful needed to see this today Gods perfect timing ⏱ Thanks for renewing my hope as a fellow MS Warrior
My husband passed from IPF. I know it is different from CF but some of the struggles are the same. Breathing and coughing.
Keep fighting!!! Much Love!!!
Thank you for sharing your heart ❤️ You have voiced it so eloquently and your words mean so much to so many every single day. And to continue to fight the good fight for yourself and others is such a virtue. May God continue to bless you and your family. We love you Mary Frey.💕🌸
I lost it when you said "my lung function increased by 19%." That's just unbelievable. What a true miracle.
Oh God “I was not a mistake”. Girl you have no idea how many people that touched and how many people can relate. You r loved and you are not alone.
Mary, I remember before Trikafta I was so scared we were losing you. You were so severely sick never getting a break from this terrible disease. This medication has truly been a miracle. I can’t imagine what life was like for you. I am so grateful this worked for you. You and Peter are truly on a new journey filled with hope and happiness. May God Bless you now and always 🙏🏻💗
She felt better soon 😭💕
Nothing feels worse than being unable to breathe or get enough oxygen into the blood. I don't have CF but I do have COPD and emphysema and have been having a really difficult time with it lately as I've been hospitalized no fewer than four times so far since early November with respiratory problems related to it. The worst feeling is when your oxygen saturation levels drop so low that you begin to feel weak and shaky despite being able to breathe and having clear lung sounds and having to practically be tethered to the oxygen concentrator all the time.
For all chronic illnesses patients we hate to hear “feel better soon” or “You look good you must be getting better”. We know we will never be better yes we have better days but tomorrow I may be in bed not able to get up. Love and hugs to you
Yup...I have lupus
they say the same thing to me you look good but I'm in pain all the time my back pain never goes away I understand
Mary you have no idea how many people you have helped with hope and life to other CF patients..God is not done with you yet. Thru your vlogging, You will help so many more patients with your inspiration
I have several medical issues caused by what my team thinks is a genetic disorder called 22q. I have some good days and some bad days where I need to rest. Some days I miss my classes on Zoom with my day program for adults with Autism on Zoom. I am grateful for my support staff at my day program who understand that I have days where I need to take a day off and they understand. I try to just take every day how it comes. Me and my team take it day by day.
@@joycechivis6317 Not only today but for years to come through her videos.
This is making me cry! My disease is extremely rare, without an FDA approved treatment, and my non-profit is fighting for a new research trial that I’m in. As soon as it is fully funded, it starts we hope by January 2022, it will be ready! I’m waiting for my “Trikafta”. It will come in my lifetime!
Best of luck to you and I’ll be praying that your medication gets approved ASAP! Can you link your non profit or a way for me to donate to it?
I was just seven years old when I was in a Goodwill with my grandfather. I have always been an avid reader and for some reason, this book with a picture of a little girl on it caught my attention. It wasn't a kid's book, but Frank Deford's book about his daughter, Alex. I do not know why I had to have it at that age, but I did and I read it, then some years later saw the movie. Ever since then, and I'm just turned 40 now, I've always kept up with what new developments there were and donated to the CF Foundation whenever I could. How anyone could think that a child born with CF is a mistake, I'll never know. I'm so glad that Tricafta* came in time for you and so many others. You are quite literally the answered prayers of those who came before you and everyone who prayed and hoped for them. Try to remember that :)
"Being made with CF was not a mistake. I am not a mistake." Wow, this is so powerful. I also have disabilities I was born with, and so often this is not the narrative we hear. I really appreciate you sharing your story, as always. 💙
Also, I am totally crying along with you. I've been following you for so long, and I am so happy that this medicine has helped you so much.
My son is 8 months and I really hope he doesn’t grow up thinking he was a mistake, I’m proud of you for sharing your story/journey I think you’re amazing xxx
Oh, my sweet girl. You are not a mistake. God doesn’t make mistakes. My grandson also has CF. He wasn’t supposed to live past 12. He is now 22 and works everyday. When I look at him I see how awesome our God is. You are a blessing to so many. May God bless you always. PS my grandson was also in the clinical trials for this medication.
My neice's parents was told the same thing. She is now 28. We have no idea her time. But are blesses for eveyday.
MARY FREY , YOU ARE A WARRIOR! Be blessed precious lady. We love you
I am “speechlessly grateful” to have come across your channel today. You & Peter and your precious Elijah have, over the past few hours, become my family, too. I love your positivity, your Faith in God and your assurance in your love of and for each other that speaks to and from your hearts and feel blessed and grateful to have been led here to you today. I thank & appreciate you both for your openness and willingness to be vulnerable in front of the world. That you stand on and in that Faith and your two, tightly entwined Spirits shine with love & happiness. You are beautiful examples of people living their religion, not beating others over the head while declaring your righteousness and our damnation. I also believe in living my religion and sharing kindness, love & the uplifting of others. The “broken world” needs all the love it can possibly get - it needs millions of Marys and Peters. It needs more of all of us who struggle to live with grace and hope, with spreading kindness & inclusivity to all regardless of financial status, color, race, or religion. To help to heal some of the pain of brokenness with that Love. Can hardly wait to watch your journey from this point forward, in hope, joy, and Love. Blessings & Peace on you and those you love. 😶🙏🏼💕
Mary, you are a warrior! I'm on hospice/end of life care from multiple medical issues including Gastroparesis, POTS, SMA Syndrome, Lupus, Crohn's and several other conditions. I've been watching you and Peter for years now and I love you both! I hope that before I pass, we can hopefully talk and maybe meet one another, somehow because you have gotten me through some dark times honey and I love ya! Xoxo💚🖤💚🖤
Mary, I’m just sitting here,I just finished your video. Your strength is unwavering, your faith is holding you up each and everyday. I can not fathom what it is like to have CF, I would equate it to drowning. To face that every day, your strength is amazing. You don’t blame God you thank him for each day you have. You give your faith, strength away to everyone. You are a gift to this world, a kind sweet woman who’s attitude is an example of grace. There is a reason you were put on this trial, to help others. No one knew if if would work, you proved it does. May God Bless you and all that you do. Peter thank you for always being there for your wife. You stop what you are doing and help in any way you can, you cook, clean make sure she takes her meds and most of all love her. She has your strength to lean on and your love of our Lord keeps you going too. Thank you for sharing your video, it is a thing of beauty.
Ive been watching your videos for a couple years now. Always informative. And you and peter and the fur babies are just the sweetest.
Hey! Harry (Chicken) isn't a "fur" baby, lol. Sorry, couldn't help it. They are blessed in having Ollie who doesn't constantly shed hair and taking Harry into their family, considering Peter's allergic to normal cats. It's a blessing when ill, to have pets to share your life with. To miss out would be terrible. We love our fur baby so much, especially not having children like Mary and Peter.
You were not a mistake and you should not feel bad getting the medication. You have taught us so much in letting us all get a glimpse of your life. We should thank you for your help and understanding. Your the best Mary! Much love and hugs.
James 1:12 says “Blessed is the one who perseveres under trial...”. Keep going, Mary & Peter. Keep going.
THANK YOU MARY AND PETER! You help me feel more "normal" about finding joy in "the little things." I think sharing your journey in such detail is so courageous and helpful to so many! Mary, there is NOWAY you were "a mistake!" And I have NEVER considered you "average" in ANY sense of the word!
Hearing you say that you were having trouble giving them a sample, your lung function improved by 19%, and hearing you talk about the playground brought tears to my eyes. So amazed to see how far you’ve come.
I can relate my grandson was not a mistake his autism ADHD and epilepsy is who he is. He’s here for a reason so are you to touch the lives of people thank you for who you are and what your doing keep it up
You’re such a pure hearted daughter of God. Listening to how badly you want to share your blessing with other CF patients. I’m sure God has great plans with your life and you’re faith allows you to fulfill His purpose in you. I have no doubt your videos, testimony and interviews are helping so many, not just CF patients and their relatives.
Mary... I'm sobbing, typing by feel through tears. I used to follow you guys a couple years ago but stopped when my own illness took over. (Not just you, everyone.) Seeing the difference, it's left me speechless. And, not gonna lie, kinda jealous. What I would not give to live life. WHAT. I. WOULD. NOT. GIVE. Obviously I don't need to tell you to enjoy it because you know that this is a gift of unspeakable value. I don't dream of this anymore for myself and frankly sometimes I wish God would just call me Home because I feel like that's all that's left for me. That you have been given this chance... I'm so, so, SO happy for you. Truly.
Mary, I am so moved by your ability to share your story and inform everyone about this life of CF and how vital it is for research of this disease. Thank you for sharing your life and your family with us. I have chronic lung disease of prematurity which has rendered me disabled. Your story gives me hope.
Mary pointed out a good reminder, be kind others you don’t know what they may be going through. ........I’ve seen the remarkable change with your Coughing and hospital admissions have greatly reduced. 🙏🙏🙏♥️♥️♥️
Mary.. your journey, your perception of the world, the way you hold yourself, your thankfulness, your determination, you are one of the most incredible people I have ever experienced. I am not religious, sometimes I wish I was! Your faith brings you so much support but I have grown up in a very agnostic community and don’t think I could ever simply believe but you and Peter teach me those lessons, I have learnt how to trust my world and what is to come, to be grateful and choose joy and so I thank you for that. You and Peter and Ollie and Harry are a true gift ♥️
Hi Mary, thanks for sharing so transparently. Such a tough disease. I have been delighted these 18 months to see your respite. Good timing too, since Ollie retired, that sweet, smart boy! Peter and you are valiant children of the Lord's. I pray for you two. ❤️ Margaret
Lord Mary, everytime you teared up, I did too. You are very blessed and you are not a mistake.
Ugh I’m crying I’m so happy, relieved and proud of you sending so much love !!!!! ❤️❤️
Mary this is amazing news! I’m sooo happy for you and Peter! ❤️
I remember the days when in every vlog Mary would cough. Today the coughing is either carefully edited out or just fewer.
Literal fire in your eyes in the beginning. Passion. Hi! I’m new here. Happy to have found y’all. I’ve been lucky enough to have beautiful CF warriors in my life. Now I found another one. 🙏🏼💓
Oh my goodness! I watched you religiously 2-3 years ago, you fell under my radar and then someone I know has had a baby with CF and I decided to check in to see how things were going and I'm crying so many tears of happiness for you!!!!! 💕💕💕💕💕 the change is immense! My heart is so full! Xx
Mary, what a touching interview. I've been watching since the basement days, and it's been amazing to see the improvement Trikafta has given you. You have always found the joy in every situation, but to see you be able to participate in so much more of life has been amazing! Praying that the medicine continues to benefit you!
Those are not tears of sorrow but of relief and joy and gratitude. We love you Mary
Mary you are such a gift you care for so many no matter what your going through. You and Peter share so much with others. You and Peter live the word of God every day you share your life. The way you talked in this video shows how much you care. Hi to Ollie, Harry enjoy your furry friends. 🐈🐾🐕
Thanks to the person that liked my comment
Wow! Mary! Congratulations on your new journey! I cried the whole time! I don't have CF, I have a chronic auto immune disease, I get my inspiration to choose joy from you! Love you sweetie thank you
I watched this before I went to work today. I was brought to tears every time you cried. I could feel every emotion you were having. I must say I do not know anyone personally who has gone through this. You go through life with so much grace and thankfulness. I hope some day I will have that as well. Thank you so much for continuing to share your story.
I cannot thank you enough for this amazing video. I’m so sorry for some of the hard struggles you’ve been through, and I cannot tell you how much your channel has meant to me. The journey you guys took us on showed faith through the struggles and joy on the brighter days. Praying for y’all. God bless.
You are truly amazing. You keep me going and loving every single moment of life.
Crying tears of joy, pain, sorrow, sadness, all of it...along with you. You're incredibly strong. Thank you so much for sharing
Who can dislike this vlog? 🤦🏼♀️
😭 along with you Mary. 19% is a miracle. 🙏🏻
I am so happy that the medication is working for you, you are amazing, it's been a long road for the cf community but I am so glad that there is light at the end of the tunnel for so many
Thank you, Mary & Peter, thank you so so much. What you are doing here is so important, not just on youtube, but with your whole lives, and your hearts, your words, your sacrifices, your pain, your joy, your laughter, your light, and your dreams. You don't just dream for yourselves, you dream for others with all the heart I think I've ever seen anyone dream for someone else. That's just beautiful. I lost the first comment I typed up months ago when I first watched this vlog. Rewatching it now, and your interview, Mary, yes, again, my heart is moved. Not just by your grief, but in the mirroring of my own, and what it means to press on with the joy and hope of the Lord. There is so much that you are doing and sharing that has encouraged me deeply in my own life, in so many ways. My chronic illness journey looks nothing like yours, and it doesn't have to. That's okay. We each walk, and that's the point. Jesus wants us to walk with Him, because He wants us to be with Him. He wants where He is to be where we get to be also. (John 14:6). I love that. And, I really love and appreciate you guys, a lot. I waited far far to long to start commenting on your vlogs, and I know you can't possibly read every single comment on your videos (certainly not reply to them all, even if you did read them all). That's okay too. Someone might read this, they might not, it's okay. I'm thankful I get to write this. Thank you. Thank you, and I thank the Lord for you. Keep looking to God and His Word. Remember God's love and truth every day.
God’s timing is amazing. Watching you in this moment say you were raised in a family where being born with CF was not a mistake; you were not a mistake. You’ve touched my heart tonight.
Best video ever. Im pretty sure we all cried with you Mary.
That was beautiful Mary. I have been with your channel for awhile now. I do remember all the hospital stays, the coughing, the IV meds, and I remember when you had to make the move to Durham. When I saw your new house I was thinking, what was Peter thinking? Three flights of stairs, laundry upstairs 😊. You were so joyful to see your new home and not one complaint about how many stairs there were to climb. I witnessed your transformation, your ability to do things you once could only dream of. I'm so happy for you and Peter that your life has become more "doable ". Thank God for the triple combo medication you are taking. Mary, you were not a mistake by any stretch of the imagination. I cried so much when you said that. God never makes mistakes. ❤ I will watch this video from time to time to remind myself how precious life is.
Mary you are never a mistake. You are a Gods blessing. I will continue to pray for you.
This is amazing... crying a river right now
Thank you Mary for reminding me to be grateful for every day I have on Earth...Be well pretty girl!
I know that feeling of guilt Mary! I have a lot of tummy issues and feel bad for those that are worse off than I am. I have not felt this good in a long time but have started to feel awful again recently. I wake up asking "Why me!?" thank you so much for sharing all of the stuff that you go through! I am not a CF patient but I am a patient who deals with my own medical issues! thank you
Mary I am so very proud of you. And you did a great job.
Thank you Frey Life for posting your videos!!!! My son was diagnosed at two weeks with Cystic Fibrosis💝💝 I cant tell you how much your videos have helped. He’s my lil miracle and you help me understand what kind of road we may have to go through 💝💝
Darlin’, this is exactly why you are one who gets respite! You hun are the most unselfish human being I know! THE MOST unselfish! Don’t you ever feel guilty, just do what I know you do on the daily...you tell God how awesome he is, you thank him, and tell him how much you love him..HE IS PLEASED xo
Peace and love always ✌🏻
Thanks for sharing this. I do not have CF. I'm battling another chronic illness. But I identified with so much of what you said. The dread and lack of hope is what is slowly eating away at me.
It can't be easy to lay yourself bare and be so vulnerable but I'm sure many are being blessed by your openness. I am. May God continue to bless and keep you 💗
I know this is an older video, but I want to add...MARY you are a glimmer of hope for everyone out here that will feel better once they hear your voice & your positive attitude comes rushing out!! ❤️❤️❤️
My hope was restored!! So powerful in them words.. I have a stomach disorder that is very rare.. not much research but when we came up with my med combo and it actually started working and I could live outside the hospital I finally seen HOPE.. praying for you! 🤍
Such a testimony! You are very brave in your transparency. And you are so encouraging.
Struggling to produce a sample?! WHAT?! This is just incredible. God is SO GOOD! I'm crying happy tears for you, Mary ❤️
“I feel strong”. That’s because you are strong, sweetie. So incredibly strong and inspiring. Not to mention your adoring husband and the rest of the family. Listening to your miraculous and hope-filled testimony made me cheer louder than watching my Green Bay Packers score a touchdown. Much love to you and your family, honey. You got a lot of living to do. Don’t feel guilty. You’re a huge vessel in helping blaze the trail of treatment and cure for others as well. 💖🙏💖
Mary, I’ve been following you guys for a long time. I don’t typically comment, but I want you to know that this is one of my favorite videos you guys have ever made. You are such a good story teller. It’s so easy to listen to you. Your story and the way you and Peter respond to what comes your way is inspiring and brings such glory to God. I was in a pretty low place today when I watched this-and the Lord reminded me over and over that He is in control. What feels like too much and too hard, is never beyond His grasp. Thank you for sharing your story, and thank you for pointing me to Jesus today.
Your attitude is inspiring. I'm so happy you were blessed with Trikafta as a treatment, you deserve it!
It is so good seeing people with CF getting older. I am in my late 50’s … I went to primary school with a girl who had CF she passed away at 15. The treatment & medication has advanced so much. Also, the possibility of having a transplant is amazing.
This was so touching Mary praise God the medicine is working for YouYou and Peter and Your animals are so special God Bless
That was beautiful, Mary. You are so courageous and awe inspiring.
Thank you for sharing. I may not have CF bit I do have a chronic illness that is often invisible. Your vlogs are what sometimes help me through treatments and nebulizers. Thank you for always being so open and honest!
I got tears a couple times! I'm so glad I found you and that I have been watching you for a few years now. Before the combo, I found you. Thanks for
sharing!
God Mary, look at you 💛 I remember finding your channel years ago and followed you ever since - seeing the improvements in your health and how well you’re doing now makes me tear up. I’m so happy for you and Peter, thank you for sharing your interview with us! 💛
I remember seeing a vlog of you with your mom and you got out of the car, walked up a hill, carried two heavy bags back to the car and get in the front seat and just start talking. No coughing. I replayed with a smile on my face because I had never seen that before for you
You have taught me to enjoy things daily thank you!! And to not be so hard on myself on the hard days I have fibromyalgia ❤️
I didn't realize you are the same age as my first son. He lost his life tragically at 18. I live for him now. I am sick and not sure how long I have left. But I am living for him and making memories for my family.
Mary you are meant to be here. We love you all. ❤❤❤🧡
Sending you so, so much love, Joanne. I hope that your days are filled with love and light and many lovely memories of your son. ❣
Mary, thank you so very much for sharing this video. What I am about to say may sound a little out there because you don't even know me, but while I was watching this video the mother inside of me wanted to give you a big hug and say "You are worth it and you deserve this treatment". I am so impressed with your continued strength, the "can do" attitude, your love for your fellow man and your faith. Keep up the great work. Peace and love to you and Peter.
Powerful and heartfelt video. Thank you for sharing this story, Mary.
You're right you are not a mistake! You and Peter are a great example of Christians. I love you both.
Glad your medicine works so well for you. Praise God.
The saddest part is that this medication unfortunately isn't available in many other countries yet.
I watched the channel before tricafta its amazing the difference it has made to ur life. Its so great to see
Mary, thank you for sharing this. I know chronic illness. It’s a challenge. To see you living your life, is great. I wish I had your hospital decorating skills. I promise that you are helping people around the country if not the world. There are medical breakthroughs happening every day. To watch you improve on trikafta has brought me to happy tears some days. I can’t believe how much your lung function test has improved. Continued prayers for improvement.
Oh Mary, we love you so much. ❤ You are such a ray of light. 🌞 A reminder everyday to appreciate everything. 🙏
Hugs from NY. You absolutely inspire me every single day. My body has so many issues too and as I get older the signs of it are coming out so much more. But I started a new med 2 years ago and it has changed my life. I can stand and walk small distances now and I am not constantly sick and in pain. And when I am having a bad day I don't feel alone and for that I thank you. We can be warriors together. I pray for you and Peter and Ollie and Harry too ☺️😊
Mary u are such a precious woman...I am standing here crying with you...Thank you for sharing your journey ❤
“Speachlessly grateful” so beautiful!! I’m blessed to have been able to see the transformation in your life Mary...it’s been truly special. Sending love & hugs, & prayers up for continued stability for you❤️🤗🙏
Dear Mary,
you‘re incredibly strong, smart and eloquent. Thank you for sharing your thoughts so honestly. I’m beyond grateful for your words. You‘re an inspiration for all beings - especially for those of us struggling with disease.
Love, Lilly
You look much younger than 31. In any case, your vulnerability is appreciated and I know you are helping so many because of it.
Honestly what people expect people to look like at 31 I don't know.
Hey Mary u made me cry with this beautiful interview I do not have a chronic illness but I do have cerebral palsy. ( love you take care u guys )
I have CP too (spastic diplegia) and Mary's optimism through such adversity really inspires me.
@@joysticktalent326 she inspires me too I literally cried two times. I never thought I would cry but seeing her cry made me cry
@Hannah Lapointe By the way I have spastic cerebral palsy but I don't know what specific type. Also thank you for responding to my comment.
I have 3 grandkids with cf and the oldest started his about the same time he has turned a 100% turn around . they have cut meds and took out feeding tube. That is awesome
This.. made me cry. I have been watching you guys since you started, watched the years when you were slowly falling apart.. unfortunately wondering when we would get a video saying you passed. Then, trifekta came in, and the absolute CHANGE in your health, is PHENOMENAL from an outside point of view. It's absolutely amazing to see this MIRACLE. God bless you & Peter, your never ending faith in Him & everything He can do made this happen.
Awww Mary! I love this. Thank you for sharing your story and you heart with us. It has been such a beautiful journey to follow along with your day to day. You and Peter are such beautiful examples for all of us who are living lives rooted in christ with a chronic illness. Your story will always be one of hope and grace. Thank you! 🌹
Christina!! How are you? I miss you so much and watch your videos often - they keep me strong!! I hope you're doing as well as possible, know you're ever in my thoughts x
Hey Sophie! I’m doing okay today. Hope you are well! My presence on UA-cam will definitely be returning sooner than later and Im excited to be able to put out videos again! 💕 Its so sweet of you to find me here in the comments ☺️
@@christinadoherty3212 I'm so glad that you're in a place where you can put out videos again! They always made me happy! Today is a hard day, but tomorrow I'm gonna lie on the sofa snuggling my dog (or cat - whoever I can pin down 🤣) and that will make the world a better place :)
What a moving video. Your story comes from your heart.
I am so thankful for your message!!! I am currently in the hospital and the 20th is my 32 birthday. I have cirrhosis in my liver and my sodium Leo will not go up. My bilirubin was a 10 and my body way in shock. Thank you for giving me back my “do what you think you can’t do” strength. God bless you your beautiful
I remember your coughing when you would first wake up and throughout your days. I wasn’t sure how long we would have you but my gf and I prayed. Knowing God was taking care of you and hoping for a better treatment. We lost a friend to CF a few years back. She was in her late 60’s. I sure wish she would of had that treatment as she suffered most of her life. So grateful This medication was available to you. No guilt, it’s a gift from God. ♥️🙏🏻
Thank you so much for continuing to share your story, your testimony. Thank you for spreading so much truth and joy. I am amazed every single time I listen to your triple combo experience. Hallelujah!
Your story was so important❤❤❤❤❤❤
The bit about Christmas was such a great way to explain mindfulness, and being fully present. This was a really great interview, very profound. Mary has such a clear, heartfelt way of articulating things.
So Powerful! You are a Trooper and So Very Strong - I admire you so much Mary!
Mary, I watched this last night but wasn't able to leave a comment so I wanted to come back and make sure I did.
You blow me away honestly. You have such an incredible way with words. Being able to express and show what your day to day reality has looked like for you (and I'm sure many others) for 30 plus years in such a short video astounds me. Every time you teared up - so did I. Every time you felt gratitude - so did I. Every time you smiled and laughed through the tears - so did I. Every time I could feel the lump rise in your throat when you thought of others - my throat constricted too. You really can touch people's hearts by sharing your experiences.
I guess I just wanted to switch the lens for once and try to encourage YOU for a change, and let you know that although many of us who look forward to your vlogs pop up each night (or day depending where we are) might not have the same genetic disease (or any for that matter) all the same, we hear you, we support you and most of all we love you.
You, Peter, Ollie and Harry certainly brighten my day no matter what the topic, be it 'let's cook unconventionally with Mary!', Peter walking Ollie, you both going on a car date, switching the rooms up.... we all come back every day because you both provide such a solid, grounding way of life - that I for one certainly aspire to.
God Bless you both and let's all keep praying for a version of treatment that will benefit ALL CF patients.
Lin, UK x
We have very different diseases and stories, but I found ‘my trikafta’ 2 years ago now. Mepulolizumab changed my life so much:’( when I was my most poorly at 19 years old I was unable to walk down the street, so many infections (no where near as many as you though, of course) my lung function is still poor but I can EXERCISE!!!!! Chronic illness is such a crazy journey. You are amazing Mary!
God bless you, Mary! I’m sure messenger RNA will help all patients regardless of their mutations. I hope soon. 🙏🕯💛🌞🌻
Hi Mary, You're a amazing, inspiration person!! I believe what I go through is nothing compared to what you're going through your whole life. And you have the most wonderful understanding hubby that's the core of your life. Your AweSome person you've come a long long way!! Thank you Mary!!🙂🙂🙂Keep going!!
You dnt seem so hoarse when speaking. You are more clearer and I notice not coughing. Just come back on your channel after a long absence. So happy for you both.
I lost my daughter in 2008 at 26years old to this awful lung disease , she had just got her vest about a week before her passing, I am so glad that they are coming up with better treatment ,still praying for a cure, Thanks for sharing
Powerful! Powerful testimony.