Kids Meet a Teen with a Rare Genetic Condition (NF1) | HiHo Kids
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- Опубліковано 27 лют 2021
- The HiHo kids met 15-year-old Philip, a geocacher from Alabama, Life Scout, and gamer who is living with Neurofibromatosis Type 1 (NF1), a rare genetic condition that can cause tumors to grow along the nerves within the body. Philip and the HiHo kids discuss NF1, its impact on his day-to-day life and how he raises awareness within the community. To learn more about NF1, including common signs and steps you can take if you or your loved one is experiencing NF1 symptoms please go to NF1andPNinfo.com.
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Kids Meet a Teen with a Rare Genetic Condition (NF1) | Hiho
• Kids Meet a Teen with ...
#nf1 #neurofibromatosis #HiHoKids
HiHo Kids
/ hihokids
I was crying for him when she asked if he could die and how hard it was for him to speak and not be sad😕😥
Same 🥺
same...
True me to
Same
Same...
I was also born with NF1 it's a rare disease and can be very scary at times. As a 29-year-old woman now I can say I have still lived a normal happy life. Proud of this young man for staying strong and positive!
Best wishes to you!
@@TarunoNafs
Thank you!
NF1 here aswell, 🙏🙏🙏🙏
I hope you are holding up well! Stay safe and bless you!
i am a 13 year olds girl and have NF1
these children are so unbelievably grown up
they’re going to be such genuinely good, educated people
i cried when he spoke about losing ppl and austin losing his relatives. i know its part of life but i just wish children didnt suffer with pain. much love, stay safe 💜
Omg I could tell he didn’t feel okay 😔
Yeah. I lost my dad at a young age and its the worst. Really hard to know that other kids have to go through this
🤧🥺😔😢😭🥺
@@kalayshatimes4384 you
@@kalayshatimes4384to talk
Man you could tell he didn’t want to answer some of these questions but he did what a legend
Ooooo
@@MunnaKhan-qm7gj 8jjo
un
ये छपी बड़ी पी छतणयणमयमययययययययय और
@@murtazahaidari1041 ك
I know I feel so bad 😔
It seems his voice was quivering the whole time like he was about to cry.... May God bless you with good health in the future 🙏
Yes GOD BLESS U AND TO BE HEALTH
I personally know Philip and he is very kind and actually pretty funny too! So thankful that he has gotten better and is still doing well! However it is heartbreaking that not all kids are as lucky as Philip is. So, if you have the opportunity I urge you to donate to help other children with NF1.
Wow me too!
@Creepy commit shut mouth
i have nf1 too and i haven’t met any teen with nf1.
@creepy, If you don't have any nice thing to say, don't comment. None of the people wasn't even talking to you.
@Creepy listen dude, why don't you take ur own advice and make everyone's life happier by shutting tf up okay and this is about people who are also fighting for their mkay?
when she asked, can you die from it, the boys face felt so sad. Oh i fell so sorry for himmm
These kids are all so empathetic. Honestly, gives me hope for the future!
Um im scared 😦
th
@
Blv@ what
yes !
Aww I feel so bad for that teen boy 😞
Me too
@Amanda Taylor Oh good to know that he is doing well😊 you are so kind
@Amanda Taylor ok
He’s in my social studies class
@Amanda Taylor ❤️
Hiho, I'd like to recommend a thing. "Kids meet someone with Borderline Personality Disorder". I checked and there isn't a lot of those mental illness videos. As a newly graduated preschool teacher with BPD it's SO hard when you're ashamed of even telling adults about it. Normalizing it for kids would give future BPDs a better chance at socializing.
I feel you , I have also gone through it .
@@Sunflower_that_loves_you And I really hope it is not "Made for Kids"
Arielle is so grown up, I remember when was she 8 years old and broke down crying when her father was talking how the police officers tased him.
What do you mean?
@@gorog42 Look up the video: “Black Parents explain police to their children”.
@@a.j.marcantonio153 I am glad to see comments on videos like these, because bots will just mark this video as "Made for Kids"
Yes it made everyone so sad 😭 but I hope she feels better
That’s a different channel...
AWWW- “do you get a treat or a toy after the doctor?” GOD BLESS HER SHES ADORABLE 🤧💖
That moment between him and Austin was really sweet
best quotes of this video
"are you okay?" 0:48
"math, science, thunder, clouds.... stuff like that" 1:02
"uh, I- I don't know I think they threw it away" 2:32
"Science, thunder, clouds...stuff like that." Phoebe has been studying in Asgard. Next we will see her wielding Storm breaker!
LMAO yes
How old is Phoebe?
She is so cute!
I have NF1, and I am so glad that you guys finally did an episode with NF. Thank you HiHo Kids!
Good luck to you and stay safe!
From a random guy on internet, are u doing alright ? Good luck on everything u do btw 👏🎉🎊
Doing fine at the moment. Thank you!
@@Wolfmyth100 is no one going to talk about how the comments are thankfully turned on and not marked as "Made for kids"
Same I never saw anyone like me with nf it feels great knowing someone is like me
I was born with NF1. I am the only one of 9 siblings that has it. I have had a lot of surgeries. All my tumors are in side me . I have to use oxygen at night because I have damage to my left lung . It is paralyzed, they removed a orange 🍊 sized tumor from my heart and left lung .
*hugs*
@@banshee1133 Thank you.
Best wishes to you ❤
@@TarunoNafs Thank you for your kind words.
I can't stop myself from crying after reading this 😞 Such a severe disease, I cannot imagine how hard it could be to you and other people who got it. I wish you lots of lucks, health and happiness 🍀
just imagine these kids growing up and working at hiho and interviewing kids in the future.
I can see that in the future for sure.
That is definitely likely to happen!
Possible
Yep
I agree they have the confidence And very smart.
I've missed Austin! Kuya here..
Go to the plaaaytime Channel to see more of Austin!
He's so big now😭😭😭😭
Austin has grown so much!
Philipinas?
Subscribe to his mom’s channel
Phoebe- she talks so well and is so mature
RIGHT?
When she asked if he could die and then he struggled to speak 🥺🥺😢
Kids should never get serius dangerous disease... Kids should be happy.. hope Phillip are okay . And for hiho kids. I love how emphatic they are..
I also have Nf1 but have been very lucky to not have had a tumor yet, it’s scary to know at some point a tumor could grow and that if it’s in your brain that you could die
my tumors are very small on my arm
Phoebe is literally the cuttest, i love to watch her grow here, also all of these kids are sooooo respecful!
I was baby when the doctors found out I had NF1 but my tumor grow on my brain and I’ve had two brain surgeries in my life and they still haven’t removed my tumor because it’s in place on my brain where if they had to remove it there would be a chance I could die but NF1 should be more looked in to I have little brown spots all over me but I pray one day the tumor will disappear it’s so nice knowing I’m not the only one that has this disease I would like to see more people talk about this it isn’t easy living with the thought of having this disease I’ve always felt different from everyone I always got made fun of at school for my spots and my learning but I pray for everyone that has this disease you are not alone and also I got mine from my mom she passed it on to me
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I have NF1 and I have lumps in my brain and have many birth marks which I was so so insecure about I am 18 now and learned to love them and call them unique. But the lumps in my brain are yearly scans and always stayed the same size thank god and got told they will cause me no harm thank god
He explained everything so clearly! He would be a great teacher in the future
I got NF too it messed up my arm i have like 13 surgery's on it im only 13 and i am like the only person in the world where it messed up my arm i think
Edit: forgot to mention that i also broke the same arm 7 times
I hope you'll do great!
Bless you
Omg,I hope ur okay kid,God bless u, may u live a healthy life 🙏 💝
Well you aren’t alone, many other people have the same problems
oh,i feel bad for you.hope you get better soon.i will try to pray for you and everyone with a disease.god bless you
I'm 13 too, sorry that happened to you
To everyone expressing that they also have the same or similar condition as him: stay strong, i'm very proud of how far you have come, things will get better I promise
Thank you
Thank you, it's hard to not feel different because of this disorder but seeing videos like this helps me to remember that I'm never alone
Thank you - I have only been mildly impacted by NF, but at times still worry about the future or how people might treat me if I tell them about NF. Seeing your post shows me that there are people in this world who do not look down on others with medical conditions and have empathy rather than judgment
:
My father had 3 tumours on his lower spine and most of the bones are missing. He can walk and do a few normal things but he still feels pain specially when he sitting on a certain chair
bless your father.
@@ketama180 i agree
i'm so sorry for your father but he sounds like such a strong person. God bless him :))
@@paulaarduo4619 Thank you and God bless you
@@ketama180 Thank you so much and God bless you
Why my tears fall when Austin said he lost his 2 ggrandparents 🥲😢
During covid. His mother made a video saying they couldn't even say goodbye. Earlier she made a post that her kids were sick so this timeline makes it seem like the family could have had COVID.
@@kittylo7922 aw 😞 i think they were april’s grandparents actually. so sad 💔
@@kittylo7922 yjml
Hats off to this little boy , he's really small and so strong , let God play fair with him ❤
For a rare condition like this, there are only few people will be interested to study them. Having an interest is just not enough, you need support for that study, like facility, finances, etc. Unfortunately no business entities will be interested to finance for this because this only means expenses and won’t generate income. Unless they’re the one having the said rare condition or one of the their family members.
awww hope it gets better tho
@Amanda Taylor yea sure you know phillip, goodluck with that buddy.
No it’s true, there is a FDA approved treatment, I’ve been on it 6 years and it did shrink my tumor 50%
@@philipmoss1690 ok cool
@Amanda Taylor because everyone says they know people in videos
Kids should never get these diseases. They are the future. This is just sad.
I have NF1. I’m happy that hiho did this. It’s awesome that’s it’s bringing more awareness to NF!
@@SBuell I had no clue what this was until I seen this video and I am praying that any kid who has this or even adult who has this will be healed by Jesus. If you believe that is good if not that is good to you will be prayed for.
I have NF1 its genetic.. 1 in 2,500 to 3,000 births
I have nf1 not herited but mutation. Symptoms varies very much with different people. My symptoms are luckily mild. I got to that tube often when I was underaged when there was more hospital controls. I was sleeping during MRI but I have always been able to sleep despite of the place I sleep. 🙂
@@BeccaBearSc I also have nf1, I also have learning disabilities and scoliosis in my spinal cord
Oh wow! Thank you so much for doing this. I have NF1. I live in England. It's not talked about enough.
Omg my sibblings and i all have nf1 and i have never heread anyone talk about it i cant belive it i feel so important that it us being talked about most doctors dont even know about it they are like what is that and my mom has to explain their are more parts to nf1 then tumors like seizures. Learning disability weeken immune system. Scoliosis and prone to pretty much all the bad things and others i also have to go to other city for my doctors when i was little i was so self consious about the cafei spots becuse someone made a comment about it being like cow spots im so glad hiho is bringing awarness
I love this! I also have nf1 and i had similar experiences
@@danaschmich2644 wow thats so cool isnt it crazy when doctors are like what is that
I feel bad for the teen “MAY HE LIVE LONG” AMEN
For a person who has NF1. We live up 70-80years old compared to everyone else
I can really empathise with this guy. I also have NF 1. It was my mum who passed it on to me. I have had several non malignant tumours, one also on my neck. I too have regular MRI scans.
Same. It was also my mom. My tumors are in my head and spine..
Same I have it I probably got it from my dad
Philip you speak so eloquently and are very informed about your NF1 . I am 48 and have NF1. I wish I knew what you know at 15.
Same I’m 13 and nf1
Phillip is such a nice guy, he was good with the kids!
I am currently crying 😭😭 seeing this may god bless him
children are amazing...i get lumps in my throat and tears every time I watch these videos. So much goodness and compassion. There's hoipe.
This showed up as an ad, I have NF1 as well. It's nice to be reminded that I'm not alone
These children are so sweet and precious.
0:21 the only moment when you realize that your mom is not watching you for the first time
Hi have NF1 too, I have tumors in my eyes so can't see much. It is amazing seeing him staying strong and positive
Hi, i have NF1 too. My tumors are on my arm very small and one small tumor on my neck. that some how went away. Also I have some of Café-au-lait spots on my eyes too.
Those kids are so kind and respectful
Loved this episode as myself have NF1 Thanks for showing
I have a classmate with this condition so it was really interesting to hear someone talk about it especially since I don’t want to ask questions
Thank you for making this!! One of my best friends from childhood has NF1, and I recall him going through so much. Not many people know about it.
thanks Hiho kids I also have neurofibromatosis type 1 thanks for sharing this means a lot do to NF1 I lost my leg about 10 years ago thank you kids
Teen: I think they through the tumor away.
Me: *HOLY COW YOU CAN THROUGH A TUMOR INTO A BIN O_o*
Well they sometimes do tests on these tumours.
Usually they will run some tests on it then throw it away
I'm pretty sure they use special red bins for disposing of biological materials. They wouldn't just throw it in a regular trash can.
@@PandaLilyZK In fact it's required by law to do this.
Gotta love phoebe 😁
Ikr
Gotta love how you can comment and express yourself and not seeing a video that has comments turned off and "Made for kids"
Wow! Philip you are AMAZING! You are a true HERO to those kids. Your honesty and consideration of others is a gem. Thanks for making a difference in the life of US all.
The ‘you’re really nice’ exchange the two boys had at the very end of the video was so, so sweet. I would be such a proud mama if I was the parent of any of these kids ❤️
My grandma had a brain tumor. One day her head was hurting so bad that they had to call an ambulance. She had to get surgery and they took the tumor out through her nose so she had to wear a bandage over it. She was in the hospital for over 2 months. After that she went blind. 😔
I am so sorry.
Woah!! I didn’t know you guys did this! I also have NF1
I have nf1 as well thank you so much for making this. It isn’t something people know about that much so thank you for raising awareness!
That kid is so courageous.... I start weeping like infant after getting cold or fever... Damn he is so confident ❤️
Love the great questions these kids are asking.
I think that people are asking them to ask some of these questions. But they are still really funny!
When Austin mentioned his great grandparents... 👁💧👄💧👁
I have NF1 and have had many surgeries including bone, bone graphs, and kidney surgery. I also have a disease called Chiari and have had 2 brain surgeries from that. Throughout it all you keep moving forward and hope for the best!
I’m so happy to see NF1 being talked about because nobody ever talks about it
Wondering why some people disliked this video (not asking in sarcasm but with genuine curiosity). There are no opinions shared, nothing wrong happened, no false facts, etc. but just a kid sharing his experience.
In the past couple of years I've seen alot of people becoming more aware of neurofibromatosis and as someone with NF 1 it's awesome to see.
I’ve had a neurologist (epilepsy) tell me to my face “you don’t have NF1 that’s too rare” only to go to a new neurologist for a genetics test and the results showed up positive for NF1 and a second genetic mutation (that they don’t have enough research for, fingers crossed it’s not anything serious)
@@Weirdastronount 🤞heres hopeing that it's nothing serious
Philip is such a warrior and it was interesting hearing about NF1 and seeing how empathetic the kids were was very heartwarming. Poor Austin my heart just broke for him 💔
Best wishes to the teen guy may god bless you and these kids also are very generous and kind when they talk
the kids are amazing , I wish I could be there and talk to kids . they are so cute
This is really cool. I have NF1 and I always love seeing videos where it is talked about.
I know right! I love seeing how I’m not the only one!!
Me 2
I love that you’re doing this!!!! Next you should interview someone with Ehlers Danlos Syndrome I have it and think it would be interesting to have people with different types.
Wow.. Such a grown-up wholesome conversation..
Thank you for this!! I have this genetic disorder as well! I have tumors in my head and spine. Non cancerous ones. But thank you!
Same with me I have on in my eye and all I’ve my spine
Wow, it’s amazing to hear people finding out about NF1 or NF in general.
When I was a kid (I still am as a 21 yr old Lul) nearly no one was able to relate, it felt really lonely
I primarily have NF2 though (in spinal chord and brain) but it’s nice for people to know about NF1.
When all is said and done about the video, I want to say:
Hello fellow people!
Same the only time I remember someone being like was when children hospital had a party for kids with nf that’s was the best time of my life
Phillip: Have you ever lost someone close to you Austin?
Austin: Two. Last year. It was both my great grandparents
Phillip: Sorry for your loss
Austin: It’s ok..
Ugh, my heart! 💜😭
I also have nf1 and seeing this makes me feel so happy that other people are learning about this
Same
Kids Meet are Back!!!
My dad and I have NF1, he had surgeries to take some tumors on his back off out but it grew back.
I have a iris hamartoma, and a soft lump on my foot...
Sometimes I forget NF1 is not really common. And there is still not a cure for it. I’m glad this kid is teaching others about it.
I think imma cry I have nf and seeing a channel I watched for ages talk about it really makes my heart full 🥺❤️
I have NF1 as well, I’m glad I came across this video!!
I have a rare bone disease called MHE (Multiple Hereditary Exostoses )
Where multiple tumours grow off my bones like branches. Sadly only met one person in life with it.
But it's very interesting hearing about other conditions similar to it :-)
Hope you're doing okay , take care
@@Zaiion Aw thankyou
You aswell 😊💕
I have morphe we’re the skin on my body dies an it happens with my feet I have never met anyone with it
Awww he is so cute I can’t 🥺
I have this condition and im 27, doing really well
But this kid is So brave for doing this to teach kids.
Austin and Phoebe, are so genuine 🙂
I feel so bad for him 😔 i hope he gets better soon
His voice was breaking trough the hole video it looks like he was crying inside while talking
its good to see Austin
Go to the plaaaytime Channel to see more of Austin!
Both of my boys have Nf1 and have tumors grow in the brain and my son lost vision due to 1.
Nf1 is such a unique condition. I have it and have no symptoms aside Cafe Au Lait.
Im happy to see this young man sharing his story. I hope he continues life in Good health with just mris and no other issues.
Please. Seeing them, talking, how they behave... My heart melted. 🥺
Is it just me or did anyone else laugh when he said “I’m from Alabama “
Why did you laugh
Pretty sure it was just you
S/O to the NF1 gang, you not alone
Me as a kid who has multiple neuro conditions, I want to be a neurologist when I older. This is a really cool video and keep fighting Philip!! ❤️
Every kid is so well spoken nd well mannered😘
I miss Austin so much ❤️
He dyed???
@@vlogs_skittle nope 😭 but he rarely come in this Hiho content
Stay safe! 😷
What an articulate individual
That kid knows a lot about the super rare condition he has . Wish him the best .
Those kids are so sweet and nice I'm in love
when i was in a mri i felt like i was in my way to heaven
Who is this child he's so sweet to answer hard questions like some of those what a legend
These kids are amazing. Bot Phillip and the HoHo kids. So sweet, polite snd caring. I wish I had been like that in that age, but trust me, I wasn´t. :(