Living with Cystic Fibrosis - Shealie's story
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- čas přidán 8. 03. 2016
- Three-year-old Shealie Hembree of Maryville, TN was born with cystic fibrosis. She has to take 20-30 pills a day to battle her illness in addition to intense daily physical treatments to clear her lungs from life-threatening mucus buildup. But see why her mother has such hope for her daughter's future.
Videography and editing by: Jason Jennings
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This video was shot on a Canon EOS 70D and GoPro Hero 4 Session and edited on Adobe Premiere and Adobe After Effects.
Poor mom, looks like she's been crying for so long, can't blame her.
Me and my brother both have CF. It's been pretty crazy but I can honestly say that CF has brought me closer to my family and most importantly to God. In my opinion you kind of have to believe in something to keep you going, and knowing that there's a kind and loving God taking care of you and waiting for you on the other side is so comforting and has brought me out of my darkest times. And CF gives you a deeper appreciation for almost everything that a lot of people overlook. I just went through a sinus surgery where basically my sinuses were completely blocked, and now being able to breathe through my nose after like 5 years, it's crazy. For anyone with CF or a parent of a CF patient, just know that it's gonna be really hard sometimes, but after you get through that you'll have a deeper connection with whoever helped you through, and you'll appreciate and savor life much more.
Samantha, I can relate to some of what your going through. I am a single father and my three year old daughter Haylei suffers from CF. What has pushed us forward is that the hope for one day a cure. Keep strong!
This mom is amazing!
I have cystic fibrosis so she is definitely not alone. I understand all the struggles and everything she has to deal with on a daily basis. CF needs a cure and the only way to help find a cure is donate to the cystic fibrosis foundation. You can always raise awareness buy wearing a t-shirt that is purple or something that shows CF. A lot of people don’t know what cf is. I educate a lot of people and it’s awesome.
Samantha Videos I also have cf so I'm with you
such a beautiful girl. How about headphones while doing her vest, or a special audio book she only gets to listen to while doing the vest, or a computerized toddler game on a tablet and again only when her vest is on. 😀 I will keep her on my prayer list, God bless.
Pamela M7 Excellent suggestion.
Poor little girl hating her noisy vest. I hope and pray that they find a cure. Children with this seem to be living longer and longer now. I'm going to give to a cystic fibrosis charity, hopefully if we all do little girls and boys now can live longer and better lives.
If you have not already check out the frey life channel she is a young adult with cf.
She's annoying as hell and clogs all the CF feeds and searches.
memi Selfandi Mary is a beautiful, positive woman. I don't know why you would put her down. She is spreading awareness for CF.
memi Selfandi you are fully entitled to your own opinion but I would like to add that I believe that she is a good face for cf patients and that she helps a lot of people through really tough times.
matted dog what the hell are you talking about!? A lung transplant is in the books for her, the doctors just don't want to do it unless they absolutely have to.
Apparently you don't watch very many of their vlogs!!! Don't be so critical. People all handle things in their own ways!!!
My daughter had CF but unfortunately she passed away at Four years old my daughter passed away today she would have been 35 I really miss her so much so when I see kids or see people who have it my heart goes out to them .lives your video was very heart touching.
I’m a retired respiratory therapist I worked at cedars which has a cf clinic I also did training at CHOC (children hospital of Orange County ) with only three hospital stays you are doing an amazing job keeping her healthy. I can remember seeing the same kids five or six times a year. Keep up the good work mom.
Aww, such a sweet bond between you two. What a beautiful little girl.
Your daughter is gorgeous! Thank you for sharing your journey!
We are now on board with you. We found out about my granddaughter at 10 days old after the baby health screening done after she was born. She is class 2 and now 8 weeks old. Being a retired Respiratory Therapist I am now on the family side living this life along with you. Thank you for your video.
poor girl 😢. I hope everything stays positive and she doesn't diserve this. (well nobody deserves this)
I've only known about CF since December last year..the little girl I nanny for just turned four and outwardly doesn't show that she has this illness. I pray that with all the medical achievements that have been made that something will come out and help people affected by this rare illness :-)
Since I've learned about CF I've been following a 27 year old girl's channel called The Frey Life and have learned so much about CF. If you haven't already it might help you with your daughter's CF :-)
Breaks my heart to see this little girl in so much distress. Stay strong.
I had friends in High School with Cystic Fibrosis. My heart goes out to your daughter. Jacqueline hopes your daughter will get better.
God will always protect you
I’m so proud of this mom
stay strong, and believe that everything will be ok! GOD BLESS AND STAY HEALTHY!
I have cystic fibrosis and I had a double lung transplant and I am one better than ever. By the way I am 13 and in 2 years I might need a heart transplant but so far so good 😊
💜🙏 god bless that little angel, love from ireland 💚
"I want my Mommy"...and your heart melts.
As a retired respiratory therapist I worked with CF patients often and working with babies and toddlers was always hard but funny at the same time. Some of the toddlers would tell you if you were doing anything wrong and would not let us get away with anything
My 1 year old son also has CF, and it was hard watching this video without tearing up. Its so hard watching your child go through this and feeling helpless. I admire your courage, and hope your beautiful daughter can get through this one day. Our son doesn’t have a vest yet so chest therapy consists of clapping with a cup. He doesn’t like that at all, and always tries to crawl away. We are hoping the vest makes it easier
Beautiful!
Bless you and your precious angel.
I so hope they will find a cure soon for this I send best wishes and healing prayers to your little girl and everyone suffering from CF
I have CF, and i can remember when my yonger brother (who suffers from CF) would cry his eyes out befor doing his vest because it was so painful 😕
Wow! Thanks for sharing. I've learned so much about CF since making this video. It's amazing what you and others battling CF have to go through. I'm so hopeful for a cure!
My friend has cystic Fibrosis and she is so brave she even say soon C.F will stand for Cure found. Also she likes go by each day saying I have Cystic Fibrosis but Cystic Fibrosis doesn't have me.
Emma Cook iam sorry
its very painful sometimes i love the feeling when it deflates
Emma Cook
Poor little mite , life's cruel ,I had a scare last month but thank God it was a mistake and he's clear of CF .it's changed my life for the better though I Cherish every moment now
My 6 year old and 1 year old cousin have cystic fibrosis. Hearing this story is so powerful.
What a sweet mommy
My cousin is 16 months old and living with cf but he might as well be my brother. He means the world to me and it kills me to think that anything would happen to him. My aunties an amazing mum and is doing everything she can to support him. As he needs the vest by age 2 we are currently raising money for it!
God blessed you mom 🥰❤🙏🙏
I lost my son to cf he was 31 so I know what you went through I hope an pray every day they find a cure soon because no child has to go through what my son went through
Stay positive your daughter is going to be fine she’ll get through this I got through cellulitis and I’m still strong today
I have cf and I love that all my friends support me when I have to do my treatments and I’m 14
Your Daughter has a lot of energy that’s good
Also wanted to add everyone with c.f is different don't let stories of others worry you. Even siblings with same c.f genes can be affected so differently. I would also add as a health professional that positive reward works e.g doing a nebulizer a reward, or having a high calorie meal/snack etc. Positive reinforcement vs ignoring the negative and persotiting the negative works.
My hearts cries for all the people who are just trying to live. I cannot imagine your situation. I am going to throw this out there, please know it is just an idea, and take it as you may. I am sure you have looked at natural remedies as well, and I realise it is just another cost, but what if,,,,,,,,,,, if you haven't all ready looked into Juice Plus. Nutrient dense foods. Again just a thought. Love you all and stay strong, you are truly amazing people. Much love.
your a wonderful mother and she is very beautiful
I had 3 older brother with Cystic fibrosis, and growing up, to know so much about it. my brother don't have the vest when they little. it was only pills they took before they eat, and breathing treatment. I remember when my brothers got older, they got the vest and did it for a whiles, but then they only do it when they go to the hospital. my parent, have my brother take 3 pill with each meal, and then 1 or 2 pill with a snack, back then, everyone thought my brother was going to give their cf to other children. my parent let my brother live their life how they want it as long as they are taking care of their self.
hi, my name is kyla i have cystic fibrosis. im currently 11. ive had 4 surgerys. ive been hospitalised many times over the years i love this video i wish her best of luck.
Hope you are doing well 🙂 🙏
poeple ask me how do i deal with cf. i dont know how to live without it. sigh. i love all of the cf kids
♥️💙♥️💙♥️💙♥️💙♥️💙♥️💙
💙♥️💙♥️💙♥️💙♥️💙♥️💙♥️
She is brave!!!!!!
I’ve been through a lot of things since birth but I haven’t been through Cystic Fibrosis.
Hi , I'm a genetic counsellor. I would let your daughter watch her favourite show or book or music during her treatment then it becomes an incentive. I feel for you being a single parent. I would encourage you to join your local chapter and support group where possible. C.f living.com also has great resources on stages of c.f life. I believe in my lifetime we will find a cure, and therapies will be targeted to different genotypes of c.f of which there are 1800. Praying for you and your daughter.
More funding for Cystic F. is necessary to find a cure and save many children’s lives
This is so beautif
I suffer from cystic fibrosis and I also know how hard it is to go through all the treatments she could watch tv a phone or a tablet cause that’s what I do
Natasha Delaney
When I was in Middle School and in HighSchool I had a friend that had Cystic Fibrosis.
Life is not fair 😥
What a cute family
Im trying to learn more about cystic fibrosis bc my brother passed away at the age of 12 from cystic fibrosis and i have never met my brother
He has a granddaughter with c.f. and she's doing amazing. They tell you to give the kids ensure all that is is cream and sugar and dairy products create more mucus who would figure so are they really watching out for our kids. They told me more calories in but they give us all the junk ones to keep our babies sicker. Go more natural more fruits and vegetables stay away from the package junk foods I wish I could turn back time soooooooooo many things would be different
Check out the FREY LIFE
Amy Kee yaaaasssss!!!!
Amy Kee the frey life is most likely the reason this video was in my recommendations. I adore Peter and Mary! 💜
I was just going to say that
I lost my sister from cf 1 year ago x
Any new update of this baby girl? 🥺
I live in the United States but I don’t have really bad cf I do not have to have surgery’s although I had a chest infection and I needed to have needles in my arms and legs for 3 weeks for me as 5 year old it felt like 3 years
I have it too
When I was her age the vest hadn’t come out yet but if it had I probably would have been terrified lol (I have cf)
Old poor thing with the vest on, I feel so bad 😔
I'm sad
Any update about this beautiful sweet girl??
Cystic fibrosis meri bhanji ko bhi h 4 saals ki h pakistan me iska ilaaj nh h better treatment konsi country me h please help me
By I am Kayla I am 11 years old I have cystic fibrosis to and I am so sorry for your daughter because it just gets worse I get made fun ofat school because of all the scars on my neck and chest and I have a Porto cath so I have a big lump under my armpit because of it and I tack really long to go up stares so I hold up my class
Kayla Carle - keep your chin up and stay strong sweet girl ❤️
I lost a friend with c.f. I hope there' a cure for cf
When I was in middle school and high school I had friends that had cystic fibrosis. I think I understand a little bit more about it now.
Your daughter is sooooo beautiful. I have lots of disabilities like Cerebral Palsy and Juvenile Rheumatoid Arthritis.
Juvenile Rheumatoid Arthritis is an autoimmune disease that causes inflammation and swelling in the joints and internal organs. In some cases the disease attacks the eyes and in some cases the disease attacks the entire body.
Keep Smiling Jacqueline!!!!!!!!
💙💜💙💜💙💜💙💜💙
💜💙💜💙💜💙💜💙💜
I’ve been through a lot in my life and brain surgeries are included in what I have been through. I was born July 27 1994 and I have been through over 50 brain surgeries.
I have shunts in my head and when I was little I was not expected to live to be a teenager. I was born at 24 weeks early and born with a rare eye disease called Retinopathy Of Prematurity. When I hit puberty I was diagnosed with an autoimmune disease called Polyarticular Juvenile Rheumatoid Arthritis.
Juvenile Rheumatoid Arthritis is similar to adult Arthritis, but the disease occurs in childhood when the child or children are still developing. There’s lots pain in the joints and swelling. The child or children may become irritable. The drugs sometimes are a lot worse than the disease itself.
The medicines given for Juvenile Rheumatoid Arthritis are chemotherapy drugs, which means patients sometimes end up with a lowered immune system. The lowered immune system can put the patient at a high risk for cancer and life threatening infections.
thanks 2 god my doughtr is cured from cf
deer are involved u may support group online ?
I had that same mask and it creeped me out SOSO SOOOOOO BAD
*** on moms account ***
I have cystic fibrosis/cf
she should learn his is treatment that has to be done. Everyday for the rest of her life. My partner has cf. he is 42. His parents treated him with the same expectations as his healthy siblings and that his treatments had to be done everyday weather he liked it or not.
Have you contacted Mary Frey? She is a married 29yo who lives with C.F. Go to "The Frey Life.com" for a whole lot more info. She has a sister with C.F. who is a wife, lung transplant recipient, and the mother of a healthy baby boy. I’m sure Mary would love to talk to you. Love from N.H., Patricia 👵🏻😉
i have it
you need to check out the new supplements they have for the kids with cystic fibrosis my daughter started to take them and has kept her out of the hospital they are all natural contact David White. They are affordable also.
It is sad with cf my cusing has got cf bles her
I have cf and I am only 9
i have it to😿😿😿😿😿😿😿😿😿
🙏🙏🙏🥰❤️🌹
Thank you i go 2kids with cf
unbelievable. hope u keep strong.
I have cf to
I did a project on it and each year cf people take like 10,000 pills each month
I have CF since. I was born 😫😫😫😫😫😷😷😷
She's so cute plus u
I treal to my baby Fatima witheng systic fibrosis wiry hard time and life with dis dises my good all childring cary all dises
i have cf and i am the little girl in my profile picture
Zogo Defused
Ul
Yes terrible I'm 37 years old and I just found out two years ago I had it cf it's no joke I can tell you that from personal experience
It made me so sad when she was screaming before and during the vest. It almost made me cry. I'm so sorry about what you're going through. 😔 I know something that will hopefully help. Google "Foods that decrease mucus production."
Did you ever her from MMS (miracle mineral supplement) by Jim Humble, maybe it works.
It's not rare...
Heather Quinn
Well considering there are almost 8 billion(8,000,000,000) people in the world, 30,000 is pretty small. Just look at the zeros. It’s all in perspective I guess, but 30,000 is a lot smaller than it seems
That’s a lie ! Liars
Don't let this video fool you. They make it sound a lot worse then it is. my boyfriend is 33 and has CF. he was in the hospital last year for the first time in 16 years. Everyone is different.
wow! so insensitive. Yes, severity is different from person to person, so what? why do you think everyone is like your bf? my friend died at the age of 14 and you come here talking shit.I guess your bf is the only person you know with cf. Do some research before talking about something you don't know. Only 30% or so of C.F. make it past the age of 18 and the life expectancy for those who are lucky is 30s and sometimes 40s. If your bf is lucky to be one of those, then thats good and I'm happy for him, but you don't need to go around bashing other people.
Zezo Zezon
I don't even have Cystic Fibrosis and I thought that comment was extremely rude. Yes Cystic Fibrosis is different in everyone
But................
You might be going through something a little different. When I was in Middle School and High School I had friends with Cystic Fibrosis.
It sickens me that people bring kids into the world for......for what?
For Themselvesss To satisfy their Own needs and wants. Oh .....I want a little pink or blue "bundle of joy" ......and that will complete MY life.......all the while not giving Any thought to the fact that that ...bundle of joy will have to live out That Life themselves and all the horror that comes with it. Poor kid.