Teen Living With Cystic Fibrosis
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- čas přidán 27. 08. 2021
- Eighteen year old OJ Daniels is living with Cystic Fibrosis (CF); a progressive, genetic condition affecting his lungs. Every day is a challenge for OJ who says living with CF is like breathing through a straw. Life expectancy is low for people with CF, and OJ’s only sister died at just 22 following an unsuccessful lung transplant. But OJ is striving for a better outcome, and with whānau support, he is in with a fighting chance. / attitudepictures
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What a great family. Especially the mother. So much love and strength. Keep fighting OJ! Hopefully you have many more birthdays!
I hope New Zealand gets access to Trikafta as soon as possible.
Such a beautiful family. Thank you for sharing some of OJ journey with us. May he find a sense of peace and a few great friends in the coming years.
I’m a type 1 diabetic, I know having that is completely different from being a diabetic but I sure can relate on having a disease that you have to take care for the rest of your life in order to live as long as you can. ☹️💯
Hey, it's totally valid to compare the two, that way! Just bc yours isn't theoretically as bad, the end result is having to babysit an illness indefinitely.
T1D gang hype! ❤
What a wonderful family you have OJ. I was nuked before birth. My dad's brother worked at Bikini when they tested nuclear weapons there and then came home to visit my dad and see his first born while I was still in mom's womb. I've had many health problems but am still alive at 69. May you keep courage and love and hope alive and may all your family and yourself experience great miracles of healing and breakthroughs of science and God.
I love of his family. Especially of his momma. She’s amazing. Family is everything. I hope OJ can live many, many more years with his friends and family. So hard to watch him coughing, this is a nasty disease. We need a cure.
Please get him some TriKafta NZ, its cheaper than transplant, hospitalizations, meds over time and OJ and all with CF deserve a chance at life, a chance to go to school, have a job, a family, a life outside of hospitals, people staring at your coughing fits, for his mother to sleep through the night. PLEASE NZ, people with CF matter, its a death sentence and now there is chance to really LIVE and BREATHE
Great guy, going through a ton. Wishing him the best.
I would love to move to New Zealand I m disabled. It’s seem more accepting of the disabled people there. It’s beautiful there, not as stressful as America.
Hi Eric, are you familiar with the CZcams channel SBSK? Check it out. Very uplifting! 💙
@@lovingmayberry2000 yea, I like that to.thanks
@@lovingmayberry2000 yes, such a great challenge.
Eric, I’m so sorry, and yes, I think America still has a LONG way to go in helping people with disabilities. My mom has MS and can’t walk and I’m her caregiver. It’s hard getting services and help for her.
New Zealand is an amazing place. I hope you get to visit us some day :)
I could watch a show about OJ and his family all day. Love them all ❤️
Kia Ora OJ, You're a truly wonderful young man with such a wonderful family.
Big Brother is a GREAT driving instructor - relaxed - OJ should just do what his brother tells him to do in the car & he'll get his license, & then he'll be driving in safety
I know this wonderful family. So much love and compassion abounds in OJs life by all that know him.
OJ you are a miracle, a blessing, a beautiful soul.
Thank you for sharing your story with us. Continue to strive beyond your targets.
Sending love and healing energy to you xxx
He is a wonderful inspiration! God bless you and I will pray for you, beautiful souls!!!!
Love this family! So much love for each other. Sending them all the love I have! 💕💕💕
Aww Happy Birthday 🎂 cutie. I was deeply touched by your story, and I'm so sorry for your loss of your sister. I have also been dealing with chronic illnesses for many year's, and know how tough it can be to fight with the Hospitals, and other things that goes with it. I pray for God's healing power to heal your body and to give you peace my dear. Take care of yourself sweetie.
you know his personality traits from early on make him a “ strong courageous warrior”
MAY GOD BLESS OJ DANIELS AND HIS MOTHER FOR HER GOOD HELPING HER LOVING SON 18 YEARS OLD WARM GREATS FROM THE NETHERLANDS WHIT LOVE XXX.
Everyone deserves access to trikafta !
It's so horrible that there's finally this chance for plcf to take their lives back but they don't have access to it !
Sending love to you and your family !
what a wonderful mother!
Thank you for sharing your story. It helps others like learn about your challenges and educate us.
Thank you for sharing your story.
They definitely need a gofundme to help get treatment!
My auntie died of cancer a few years ago now... One day at her house on paku Hill in tairua I was visiting and an own flew into the lounge... I never new the meaning but I new it had a special one... Comforting to watch this
Thank you for sharing a piece of your journey. 🤟💞
I pray OJ is doing well and on Trikafta . His Mom is just crazy amazing. I have had RTs not do CPT as well as she does. She really gets what is needed to stay as healthy as possible with CF . Really super family.❤
god, i relate so hard to age 18 meaning, ‘gotta learn to manage my illness in the following ways,’ instead of it meaning, ‘ID//DL//club//drinking//smoking//voting, etc.’ those things may or may not come - either way, that’s certainly not the priority or what’s at the top of our 18yo bucket list.
i see you, OJ!
you’re kicking ass when it comes to this life thing. you got this!
keep up the great work. 🖤✊🏾
A friend of mine has the same condition and she was informed to avoid mucous forming foods such as dairy.
Her health has improved.
Isnt this is a myth?
I have cf and chose not to consume dairy for personal reasons, milk is a great source of calories for a person with cf !
Awesome family. My grandson has CF n my prayers for a cure is for each n everyone with this horrid disease.
What a beautiful family 💖
God bless you. Be strong. Thank you for sharing. Hugs.
OJ is beautiful inside and out. He reminds me of Ollie Alexander from years and years. He and his family have been through so much I can't imagine. But they seem so strong and close knit. I wish he and his family strength and blessings to live life to the full.
I hope he lives life as enthusiastically as his gum chewing!! >_
I was born with a autoimmune disease called alpha one antitrypsin disease that affects the lungs and the liver. It’s genetic and my father and brother had it as well. My father was one of the first patients in the United States to receive a double lung transplant some 18 years ago in Denver Colorado. It added 2-3 years to his life and he passed away at the age of 44 in 2005. I am currently about 2 months from my 39th birthday and am on the mend from both covid and long covid. Life is good, and god is good. My prayers go out to all the people living everyday with debilitating conditions and the amazing drs who are helping them to find some normalcy.
I want you to know , I have been advocating the NZ govt for TRIKAFTA for all Kiwis ! Here in Australia it has just been approved under the access scheme. I have personally wrote to Jacinda to get it approved ! Esp after watching this video ! I lost several friends in the 90s to CF so I'm really passionate about the cause.
Please can you do a update ?? Thinking of you in NZ all with CF .
Sonia, Sydney Australia
Big love from Cali OJ never tap I will ride for you and I will never Tap I been on a wild trip with this CF , your a badass true solider! Give it your all till the day we fall🧬
🙏⚘🙏 Blessings to you and your family.
Hi OJ 👋 thank you for the education. I thought it was about bones 🤦 feeling ignorant rn, but thankful for the blessing of you and many like you. Kia ora whanau
Cf is different in everybody, a interesting fact is that if you where to kiss a cf kid like on the forehead they are extremely salty because they excrete more salt then they should when they sweat. Cf is 1 in 1,000 and there’s about 70,000 people with cf world wide and about 30,000 only in the US. I have a brother with cf and he is doing very well right now that’s why I know quite a bit about cf.
I went to school with OJ's brother, Derek. They are an amazing family.
Beautiful loving family
18:00 💔 When he said we all know
I don't have much left. He truly is
counting the days left.
Isn't there a medicine now that can help u
My 2 year old has cf, while medication is amazing only half of the people with cf live past their life expectancy, medication unfortunately isn’t a cure it only helps manage the condition, the more bacterias you grow on your lungs through catching colds and other germs it causes lung damage, unfortunately you can’t reverse lung damage which results in transplant, some can be on the waiting list that long they either don’t make it or there not in decent health for the surgery and if you are able to have a transplant it only gives an extra 5-10 years without organ failure xxx
What a beautiful Whanau😍🥰..
I'm so happy to hear TRIKAFTA has been approved in NZ !!!
OJ amazing man and has an amazing family. Understand how it feels I have a chronic illness that there is not any cure for. I hope New Zealands gets that drug soon
Hope everyone is still doing well ❤️
I can't believe Trikafta isn't available in NZ! How an those of us in America help?
wow didn't think thr trifacta would be that far away its a shame when u see so many on u tube doing so much better.
I fear for Derek’s health, at his size he is at great risk.
It would be really good if you could make an up to date vlog sept 2023 of OJ. Is he on TRIKAFTA? Its been approved here in Australia
May💙 God❤️ Be💛 With💜 everyone❤️ Always❤️ Much💜 Love Blessings❤️ Always ☺️ ✌️ 🙌 🎇 🌈 🙏 ☺️ 💯💙💙💙❤️❤️❤️💙💙💙❤️❤️❤️❤️
My heart goes to you all
Do they not have Trikafta in NZ?
I have bronchiectasis. Its sometimes referred to as non cystic fibrosis. I'm in my second flare up in 3 months.
It is so cruel not to make trikafta available to those with CF
What do you mean?
Mary Frey takes it and she has CF. Given her a new life! It’s also like 25,000 a year or a month.
@@joancottam6956 it’s 25,000 a month I think.
It’s just harder to get some places yes its terrible that some people can’t have access to it but as of right now people are doing their best
can he not use a vest for the pt
I think those shoes are the OG Chicago 13's. Those came out in 2017 was this filmed back then? Hope he's doing OK.
What an amazing Mum, a beautiful young man, and an amazing family! What can we do to help him get the drugs that he needs?
a nice video
I understand Trikafta is a game changer for the illness …
I have a question without sounding rude here why the hell would you even bother having another baby knowing the first one had this fatal illness why? So many parents do have many and they end up having the samething and dieing young I just don't get it and do they think maybe the other one they make it will skip this fatal illness?
First of all, can you please make a update to OJ where he is now ? And is he on TRIKAFTA? Its been approved here in Australia. Since a few months ago in 2022.
I also find it quite concerning his weight is so low, but does he have a feeding tube???
My boyfriend and his sister have cf so i know the difficulties it causes
Would one of those massage chairs help him
🙏😪💔
what area was this filmed? its a lovely place
Our documentaries are filmed down in New Zealand. This one is Rotorua, it IS a lovely place you should visit!
the sister was really pretty
Wow
He looks like Cameron Boyce from The Descendants
🕊😇🕊
Is OJ still alive ? Trikafta has been approved in Australia $7.00 for concession holders. $40.00 for others.
What about Triafica? Spelling?
They said that In NZ it can take another 4 years before it’s available.
MAY GOD HELP THIS YOUNG BOY CAN YOU GIVE ME YOUR ADDRES I SEND A POST CART TO HIM AND THE FAM THANKS GREATS JAAP THE NETHERLANDS.
😻😻😻😻😻
Is OJ still alive? Is he well? This made me cry
Lasagna is one of my favourites
Hello guy
1 Corinthians 15:3-4 KJV
3 For what I received I passed on to you as of first importance that Christ died for our sins according to the Scriptures, that he was buried, that he was raised on the third day according to the Scriptures
John 3:16
16 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life
Ephesians 2:8-9
8 For by grace are ye saved through faith; and that not of yourselves: it is the gift of God:
9 Not of works, lest any man should boast
ROMANS 10:13
For “whosoever shall call upon the name of the Lord shall be saved.”
Acts 2:38 - Then Peter said unto them, Repent, and be baptized every one of you in the name of Jesus Christ for the remission of sins, and ye shall receive the gift of the Holy Ghost