Living with Cystic Fibrosis – Shealie’s story


My name is Samantha Hembree. I’m 25 years old. I’m a single mom and I have a three-year-old beautiful little girl. Her
name is Shealie Rain. And she has cystic fibrosis. When Shealie was born, she didn’t
want to eat. At eight days old, whenever we found out Shealie had CF, I
couldn’t have told you much about it. It is a very rare disease. It only affects 30,000 people in the United States, 70,000 worldwide. It’s classified as a chronic lung disease, but it also affects anywhere that your body naturally
produces mucus. So that’s going to cause problems mainly in the lungs. It also
affects her pancreas, her liver, her GI tract, her reproductive organs and her nasal cavaties. In all, she’s had
three hospital stays and two tune-up surgeries. From day one, we have to get
up an hour just to do her treatment. “I don’t want to!” Her vest is really loud. She doesn’t like
that. That is the one thing that bothers her. Now when we do treatment, as soon as we put
on her vest, “Mom is it over? Mom is it over? Are we done yet? Are we
there yet?” -“Do you like doing your treatment?” -“Nope!” -“No, why, not?” -“It makes me crazy!” -“It makes you crazy?” (laughs) “What superhero are you today?” Shealie, she loves playing outside. Loves
playing outside. I cannot keep her from being outside. She also loves to
color it doesn’t matter if it’s crayons. It doesn’t matter if it’s markers,
dry-erase markers, painting… -“What are you drawing?” -“A puppy!” One of the saddest things with
cystic fibrosis is you cannot go within 10 feet of someone else with GF without PPE,
without personal protective equipment, and the one person I would
want to talk to is somebody who is going through the same thing I was. “This is Shealie’s medicine cabinet.” Shealie is on, wow, probably 12 to 15
medication/treatments. She knows that she has to take medicine before she eats. She’ll say, “Medicine first.” She takes six pills with every meal,
three with snacks, and that’s all day every day. So that adds up
to 20, sometimes 30 pills a day. She’s had to take these medicines. She’s had to take
these pills, and she’s had to do these treatments, and she really doesn’t know
any other way. But now at three, she says, “Mom, this is yucky, and I don’t like it.” -“I know. That’s a yucky one, huh?” I don’t ask too many questions about
what is it going to be like when she’s five? What is it going to be like when
she’s ten? Because medicine, it’s come so far and has a long way to go. To anyone
watching this video, whether you’re just learning what cystic
fibrosis is or maybe you have a CF kid just like me at home, stay positive. Stay
optimistic. Tomorrow is is very bright for us and for all the other CF kids. The
way medicine keeps changing, they’re going to have a medicine for her
and then the next day they’re going to have a cure. -“Yes?” -“I want my mommy!” -“You want your mommy?”

Comments 88

  • Beautiful!

  • I lost a friend with c.f. I hope there' a cure for cf

  • This is so beautif

  • 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 😕

  • 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!

  • She's so cute plus u

  • If you have not already check out the frey life channel she is a young adult with cf.

  • Did you ever her from MMS (miracle mineral supplement) by Jim Humble, maybe it works.

  • Poor mom, looks like she's been crying for so long, can't blame her.

  • stay strong, and believe that everything will be ok! GOD BLESS AND STAY HEALTHY!

  • It is isolating, isn't it. My daughter w/cf is 7. It's been a rotten summer with 2 weeks in the hospital, then sick again two days later, then sick again a week after coming down from 3 treatments a day. Back to 3 now and another virus. I've been watching The Frey Life on youtube, where Mary, who is 27 has cf. It is nice, because it made it so I'm not as fearful and I can get an idea of what may come later on. But, I rarely think of the future. Your daughter is beautiful! Doing everything on your own — oh my goodness. I have older children who help and my husband who helps at night, and I'm still exhausted (then again, I'm 52 and not in the absolute best of health). Do you have everything you need to take care of your daughter? Can I help you with anything? Please think about it <3 . I'm at [email protected] Best of everything to you <3

  • Breaks my heart to see this little girl in so much distress. Stay strong.

  • 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.

  • 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.

  • 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.

  • 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."

  • 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 🙂

  • poor girl 😢. I hope everything stays positive and she doesn't diserve this. (well nobody deserves this)

  • Bless you and your precious angel.

  • I have cf to

  • It's not rare…

  • The CCF is always raising funds to do research and find a cure for CF. I
    have a daughter with CF so I too know 1st hand the daily treatments
    people with CF go thru. This year I am participating in a CCF Xtreme
    hike to raise funds. My heart and prayers go out to you as I hike the
    30.1 miles in one day. I will take you, each and every one of you with
    me every step of the way.
    http://fightcf.cff.org/site/TR/Hike/12_Carolinas_Charlotte?px=2983378&pg=personal&fr_id=5907&_ga=1.148161271.1786106114.1485816649

  • 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.

  • deer are involved u may support group online ?

  • I lost my sister from cf 1 year ago x

  • I have CF since. I was born 😫😫😫😫😫😷😷😷

  • 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.

  • Aww, such a sweet bond between you two. What a beautiful little girl.

  • I have cf and I am only 9

  • I did a project on it and each year cf people take like 10,000 pills each month

  • 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

  • i have it to😿😿😿😿😿😿😿😿😿

  • What a cute family

  • 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

  • Check out the FREY LIFE

  • I had that same mask and it creeped me out SOSO SOOOOOO BAD

    * on moms account *

  • I have cystic fibrosis sub to my channel if you want to see all my meds

  • i have it

  • This mom is amazing!

  • 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

  • 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.

  • It is sad with cf my cusing has got cf bles her

  • I have cf and I love that all my friends support me when I have to do my treatments and I’m 14

  • your a wonderful mother and she is very beautiful

  • 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

  • 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 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.

  • 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!

  • Such an innocent beautiful brave young child💜💜💜💜

  • Lung surgery.

  • I had friends in High School with Cystic Fibrosis. My heart goes out to your daughter. Jacqueline hopes your daughter will get better.

  • My 6 year old and 1 year old cousin have cystic fibrosis. Hearing this story is so powerful.

  • 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. <3

  • 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 <3 keep on going through life

  • ♥️💙♥️💙♥️💙♥️💙♥️💙♥️💙
    💙♥️💙♥️💙♥️💙♥️💙♥️💙♥️

    She is brave!!!!!!

    I’ve been through a lot of things since birth but I haven’t been through Cystic Fibrosis.

  • Thank you i go 2kids with cf

  • I have cf and my family can't afford a vest

  • 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

  • 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.

  • Tuberculosis is one of the life threatening infections that can come from the Arthritis medicines.

    But I take those medicines because I cannot live with the pain.

    💚💙💛💚💙💛💚💙💛
    💛💚💙💛💚💙💛💚💙

    Tuberculosis is a life threatening lung infection. The medicines can also cause cancers like Lynthoma.

    💜❤️💜❤️💜❤️💜❤️
    ❤️💜❤️💜❤️💜❤️💜

  • i have cf and i am the little girl in my profile picture

  • 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.

  • 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

  • I have cystic fibrosis/cf

  • 💜🙏 god bless that little angel, love from ireland 💚

  • She’s a little angel 😇❤️❤️🙏

  • selenium can cure cystic fibrosis
    See Dr.Joel Wallach You Tube

  • What a sweet mommy

  • More funding for Cystic F. is necessary to find a cure and save many children’s lives

  • I was diagnosed with Idiopathic pulmonary Fibrosis (IPF) 3 years ago. I had no idea i will still be alive today because of the stories I have heard about this horrible disease. Initially, the doctor thought I was asthmatic and he gave me many different inhalers to treat my asthma, but none of them worked. I kept going back and saying things weren't right. I couldn't talk without coughing or do normal routine activities without getting out of breath. Later, I was cured for pulmonary when i came across a blog it change my life: http://curetoidiopathicpulmonaryfibrosis.blogspot.com/ or contact Dr George at [email protected]

  • SHE NEEDS THE MINERAL SELENIUM
    SEE DR. JOEL WALLACH ON HIS YOU TUBE CHANNEL
    LORD BLESS YOU

  • 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)

  • Cystic Fibrosis has solutions, contact: [email protected]

  • 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.

  • 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 👵🏻😉

  • 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

  • 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.

  • 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

  • Selenium cures CF.

  • 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 😊

  • 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.

  • Your daughter is gorgeous! Thank you for sharing your journey!

  • 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.

  • 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.

  • 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.

  • Look into the new drug therapy Trikafta it's a medical breakthrough that actually changes and fixes the DNA mutation so the body stops over producing mucus. It may save her life. This isn't just a "oh do this random thing that won't work" comment, Trikafta DOES WORK. Please look into it.

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