10 Of The Rarest Conditions In The World | BORN DIFFERENT

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truly

truly

Күн бұрын

Пікірлер: 886
@truly-channel
@truly-channel 11 ай бұрын
If you enjoyed this video, check out our Born Different playlist: kzbin.info/aero/PLUkdT9ljJ1cbFTk10utsTb-RGsujT5bG4
@herbzah5405
@herbzah5405 7 ай бұрын
It's crazy but, when I saw her clearing the liquid medicine vial of air bubbles, it entered my mind "she should be a nurse"!🤗 Sweet😇 girl❤🙏long and happy future
@Voidvampy
@Voidvampy 10 ай бұрын
Lauren's words of "there's gonna be a time where I'm going to need to be scared, and now's not the time" are actually so deep and profound. She has such a good point and I think I'll use that mantra in my day to day life
@lotuspocus76312
@lotuspocus76312 8 ай бұрын
Lauren just breaks my heart. ❤
@McCookieParty
@McCookieParty 8 ай бұрын
I am very moved by her courage and desire to help others. She does have a beautiful spirit and will of a warrior.
@mindymorgan8479
@mindymorgan8479 7 ай бұрын
Wow this is so so deep. Be scared when it's time. Hmmm. Same new mantra.
@jeffmonroe6317
@jeffmonroe6317 6 ай бұрын
I wouldn't have gotten that pump.
@token555
@token555 5 ай бұрын
​@@jeffmonroe6317 Without it, you'd likely be dead
@laurenobenauer9118
@laurenobenauer9118 11 ай бұрын
Levi is so articulate and is able to explain his condition so well, he’s a wonderful kid and his mom is so sweet and compassionate
@bekind6684
@bekind6684 4 ай бұрын
@teejaykaye
@teejaykaye 3 ай бұрын
I know right! He’s such a delightful character
@ingridakerblom7577
@ingridakerblom7577 2 ай бұрын
They are both just so sweet & amazing! They are so lucky to have eachother
@ViewerNumber9
@ViewerNumber9 2 ай бұрын
Indeed 💔. Very humbling.
@christinaprn
@christinaprn Жыл бұрын
I’m very impressed with Lauren. She’s obviously extremely intelligent. I also have a rare disease, and have lived 11 years longer than my life expectancy, so far. And as a nurse of 32 years, myself, I’m thrilled that Lauren plans to be a nurse.
@ItsAAABatteryJuice_
@ItsAAABatteryJuice_ 11 ай бұрын
May I ask what rare disease you have? i have Prader-Willi Syndrome
@MercurialRed9
@MercurialRed9 10 ай бұрын
@@ItsAAABatteryJuice_ Does this one include muscle weakness and constant hunger?
@ItsAAABatteryJuice_
@ItsAAABatteryJuice_ 10 ай бұрын
@@MercurialRed9 yes, it does
@stephanieann622
@stephanieann622 10 ай бұрын
Congratulations to you 🎉! What an accomplishment, that’s why I always tell people that doctors don’t know everything. You should also be very proud of your nursing career. I bet you’re a compassionate and attentive nurse. Being in and out of the hospital probably helps you see so many different people.
@stephanieann622
@stephanieann622 10 ай бұрын
@@Kenny-yl9pc me too. I hope she really likes it and it doesn’t harm her health. Maybe working in a field that you choose would make life less stressful. I wouldn’t know personally, but I think it may be better if you really want to do what you’re doing 😊
@banecombs4118
@banecombs4118 11 ай бұрын
Zion, your Mom emits 100% calm, sweet, and perfect. You have blossomed into an amazing young man. So happy for both of you.
@kenmtb
@kenmtb 8 ай бұрын
She is an amazing woman!
@-AMYLYNN-
@-AMYLYNN- 3 ай бұрын
They both are AMAZING the got to choose to be a family and it's so beautiful.
@ME-gy6hi
@ME-gy6hi 10 ай бұрын
I was born without hip joints called bilateral hip dysplasia. When I walked, my hips swayed side to side which was really noticeable. Had many struggles and overcame so much. At the age of 32 I could not take the pain anymore and finally had hip reconstruction surgery. When I got married my friends and family saw me walk ‘straight’ down the aisle for the first time. It was a very happy day!!
@hopeg02
@hopeg02 10 ай бұрын
That’s beautiful! Must have been the most amazing wedding day for you and your friends and family ❤️ glad you are feeling better
@juliewilliams1441
@juliewilliams1441 9 ай бұрын
❤❤
@J-Rod91
@J-Rod91 8 ай бұрын
Congratulations! I am so happy that you are happy and healthy! 👏🏻🥲
@EviBall
@EviBall 8 ай бұрын
❤❤❤❤wish you happiness
@jaccaj1626
@jaccaj1626 7 ай бұрын
Congratulations!😊
@ttoxicccify
@ttoxicccify Жыл бұрын
Zions mom is an angel on earth. I absolutely love her and love that he has her ❤️ she looks like she could lift anyone’s spirit
@androgynylunacy
@androgynylunacy 11 ай бұрын
I wish I had had a mom like her. Her love for him just brings a happy tear and huge grin to😊 my face.
@helenedesforges3483
@helenedesforges3483 11 ай бұрын
@@androgynylunacyI agrée and I would love to have a mother like her too
@cattymajiv
@cattymajiv 4 ай бұрын
Yes! So would I! ❤❤❤
@artchic528
@artchic528 11 ай бұрын
The way Isla began to look sad and lay her head on her mom’s shoulder when she saw her crying was just the sweetest thing. The compassion, empathy and love that sweet girl has for her mother is just beautiful.
@ckhvr
@ckhvr 8 ай бұрын
“Isla” is my sisters name haha
@saraf9081
@saraf9081 11 ай бұрын
The mother that adopted Zion is amazing. She clearly loves him and is proud. Gd bless special people like that
@debrakleid5752
@debrakleid5752 11 ай бұрын
My mom had a very rare condition that caused her white counts to drop very low and if she got an infection at that time she could have died. I almost lost her when I turned 12 years old. When she was 53 she was diagnosed with breast cancer and unbeknownst to us the chemotherapy that she received to treat this cancer was also a treatment for her condition and she hasn’t had any issues with it for over 25 years.
@TheoRae8289
@TheoRae8289 10 ай бұрын
Oof. I'm glad the cancer treatment ended up being a bigger boon than expected.
@allysonashby5201
@allysonashby5201 10 ай бұрын
Amen! How great!! I'm so glad for her.
@alidabotes6264
@alidabotes6264 9 ай бұрын
Wow! That's fantastic!
@CaitlinElm
@CaitlinElm 8 ай бұрын
What a massive W. I am so truly happy for your mom
@mercedes523
@mercedes523 8 ай бұрын
Wow! So incredible!
@marysiegel7974
@marysiegel7974 11 ай бұрын
Levi has a special gift. Someday he will be lecturing the medical community regarding his condition. He is brilliant already.
@lovetteezenwa
@lovetteezenwa 7 ай бұрын
GOD will see him through in JESUS NAME AMEN!
@cattymajiv
@cattymajiv 4 ай бұрын
@@lovetteezenwa No. He is an amazing person who doesn't need a crutch. He will see him self through. With flying colors!
@A-n-n-a.1676
@A-n-n-a.1676 Жыл бұрын
These people face two battles. One being the illness itself and the other living in a world where so few people understand what they’re up against. ❤️🙏
@julievanderleest
@julievanderleest Жыл бұрын
Very true. Not to mention the bullies are cruel. It effects you for the rest of your life too.
@quiyotralala7760
@quiyotralala7760 11 ай бұрын
I have a rare alness, called gilles de la tourette, and we are always fighting two battles, but the battle is worthie so, no problem here
@emilywarren3053
@emilywarren3053 10 ай бұрын
Profoundly true
@raesmedley7018
@raesmedley7018 8 ай бұрын
@marybodnar4749
@marybodnar4749 7 ай бұрын
You are so right. The first battle of people with rare disease may not have a cure. However, that second battle, there’s a cure for that: inclusivity, compassion & destroying prejudices.
@maryreynolds5310
@maryreynolds5310 11 ай бұрын
Lauren is one tough cookie! She lives her life the way each and every one of us should be doing! She takes each day as it comes, prays for another day gone well and for tomorrow to be the same. She is smart as a whip and could have a career in about anything she chooses, I have no doubt! She knows where she’s been and where she is going…I definitely give this young lady kudus and two thumbs up! I know your mom is so proud 😊
@TheoRae8289
@TheoRae8289 10 ай бұрын
So long as she has access to subsidized healthcare. If her state got rid of their version of medicaid, she wouldn't be able to afford the meds keeping her alive. People die from not being able to GoFundMe for their insulin.
@kerrywood407
@kerrywood407 11 ай бұрын
Levi has absolutely stolen me heart. He’s so sweet yet goes through so much he’s an incredible little boy. ❤
@marybodnar4749
@marybodnar4749 7 ай бұрын
I feel the same way!! Levi is pure light ❤
@pla4825
@pla4825 4 ай бұрын
The way Zion keep his body physically fit without legs I have no excuse to be out of shape he is inspiring 😊
@dligg413
@dligg413 11 ай бұрын
Awwww Zion and his mom is such a great story. I wish they would have met sooner, you can tell she has the best spirit…. GOD bless you and your family
@redlady222
@redlady222 11 ай бұрын
I love how Carlie says ‘We’. ‘We have amazing doctors.’ ‘We have a solid plan.’ It’s obvious that her friends and family have wrapped her in a great support system, and she doesn’t feel she has to face things alone. Love it ❤
@jeffmonroe6317
@jeffmonroe6317 6 ай бұрын
Her new apartment had way too many corners and hard surfaces.
@ambergriffin91
@ambergriffin91 Жыл бұрын
Kids w rare conditions and/or disabilities stand out so much & are usually more intelligent than others their age for some reason 😊 Zion’s mom is a beautiful ray of bright & radiant sunshine! Adopt meeee ✋🏽❤
@TheoRae8289
@TheoRae8289 10 ай бұрын
They're forced to know more about themselves than kids without those conditions.
@smnewstead4093
@smnewstead4093 7 ай бұрын
They actually usually have cognitive deficits
@kennie1814
@kennie1814 9 ай бұрын
I love Michelle so much!! She’s so cute and sassy and just RADIATES positive energy and good vibes like a star!
@PupcakesDogCare
@PupcakesDogCare 11 ай бұрын
Lauren is an absolutely incredible young woman!!!! I hope she lives a very long happy life with her sweet pup!!!!! And i HATE how expensive it is to get medication to keep us alive!!!!
@pegs1659
@pegs1659 11 ай бұрын
Its ridiculous and shouldn't be that way. Drug companies are the anti Christ.
@lindawild6568
@lindawild6568 Жыл бұрын
I have worked with a young man who was diagnosed with a rare disorder and thankfully both he and his family had always sought the best quality help and treatment for him. We were very excited when he came to our group home to seek help and independence. Over the next few months he really began to blossom and come into his own person, showing his family who he really was and that he was capable of overcoming his struggles and getting stronger everyday!
@kaitlynwellspring-cj2bf
@kaitlynwellspring-cj2bf 9 ай бұрын
Zion just wanted to say your bond between you and your mom is like gold
@KadeLee2007
@KadeLee2007 9 ай бұрын
Isla was the most precious baby. You can tell she has a lot of emotional intelligence and picked up fast on what other people were feeling and talking about. She’s a very clever girl.
@mithatcan10
@mithatcan10 11 ай бұрын
Levi you are the most adorable kid with the nicest mum in the world. I hope you get surrounded by nice people like you and your mum.
@lindsayschmidt2177
@lindsayschmidt2177 6 ай бұрын
Zion’s mom is truly so lovely, I know he didn’t spend most of his childhood with her but you can tell the influence her love had on him. I’m so glad they found each other.
@lisachatham8690
@lisachatham8690 Жыл бұрын
All the people in this video are beautiful!! The families are so supportive.
@KaylaPearlCPNinja
@KaylaPearlCPNinja Жыл бұрын
I had the rare outcome of surviving a grade 4 intraventricular brain hemorrhage that took place 2 weeks before I was born. Most babies who deal with this type of severe brain injury usually die , at a rate of 60%. Despite it, I was diagnosed with having spastic hemiplegia cerebral palsy which affects my left side of my body. I also had hydrocephalus and I still have the same shunt that I received when I was around weeks old.
@OneBadAssMoMo
@OneBadAssMoMo 9 ай бұрын
You are a badass CPNinja! ❤ so very glad you’re here!
@maryssalynnemedley8871
@maryssalynnemedley8871 9 ай бұрын
And you're intelligent, interesting, and probably attractive too.
@Cykotyk
@Cykotyk 7 ай бұрын
My daughter was diagnosed with spastic hemiplegia cerebral palsy, and low functioning Asperger's. She's the strongest person I have ever known. I hope your life is as wonderful as you can imagine.
@startrooper2345
@startrooper2345 Жыл бұрын
75k a month is WILD. we need free healthcare.
@jenniferbowie2773
@jenniferbowie2773 Жыл бұрын
If we had free healthcare she would be dead already!
@TheoRae8289
@TheoRae8289 10 ай бұрын
Makes me sick to imagine how much of that is pure profit.
@pippilangkous5089
@pippilangkous5089 8 ай бұрын
Unfortunately the free healthcare in my country would probably not cover the medication because it is a rare disease and the price is too high.
@grumpyboiinc52
@grumpyboiinc52 7 ай бұрын
@@pippilangkous5089the price wouldn’t be that high in your country. Your government would most likely stop the price gouging
@pippilangkous5089
@pippilangkous5089 7 ай бұрын
@@grumpyboiinc52 You are sort of right: because our government is making price agreements for all the people in our country, moet of the time the price goes down because of the amount of medication they are negotiation about. However in the case of rare diseases we are talking about only a dozen of people. That is not a large enough number to negotiate with. Then we bundle forces within de European Union to get ist a little bit doen. In the case of the medication for pulmonary hypertension, I looked it up: under certain conditions it will be paid for. It costs a bit over 13.000 euros per valve in our country. So they got it a little bit down I gather.
@lisajeter9511
@lisajeter9511 11 ай бұрын
Michelle’s happiness is contagious!
@jaimew1539
@jaimew1539 10 ай бұрын
Lauren is an extremely mature and impressive girl. The way she speaks is just wow! I’m speechless. I hope all her wishes and dreams come true.
@julievanderleest
@julievanderleest Жыл бұрын
I have my own rare syndrome but there’s still 60,000-80,000 people in the world who have it. Effects 1 out of 100,000 births. These kids are true legends.
@smnewstead4093
@smnewstead4093 7 ай бұрын
It's not about the rarity, but the lifespan and symptoms
@AnnHolloway-i4c
@AnnHolloway-i4c 9 ай бұрын
I lost my husband 4 mths ago after 44 yrs. I was feeling very sorry for myself. Then I watched this. I have so much to be grateful for after a long life with all the things ive taken for granted. Health, marriage, kids, career, happiness to name only a few. Im looking at my life differently now. Of course i miss my husband but we had a full and happy life together and im trying to turn loss into thankfulness. You guys make the rest of us look weak and ungrateful. Im sorry and im determined to do better after watching all you guys you are all heros. Love and prayers from me to all of you.X
@IAmSuzyQ
@IAmSuzyQ 11 ай бұрын
Lauren, if by some chance you ever run across this comment, I just wanted to wish you all the luck in the world with your condition and with nursing school! I've been a nurse for over 20 years now, and I would be honored to work along side you some day. You're going to be amazing! Take care and be well, future nurse...YOU GOT THIS! ✌🏻💜🫂
@micaiahstice4444
@micaiahstice4444 10 ай бұрын
Man Zion is truly a inspiration for me just watching 👀 this today and feeling like crap and not wanting to get up and go but just watching what he has overcome and his attitude towards life there’s no excuse for me to cop out and be negative about anything that god has given me…. He and his momma especially… what a woman she is! He’s lucky he found her and she is lucky she found him! She’s got her ticket 🎫 heaven and god bless them both and they deserve everything awesome that comes their way!
@TheoRae8289
@TheoRae8289 10 ай бұрын
That frame of mind is going to make you feel worse and worse. Don't let these stories make you feel like you're not allowed to have your feelings or are not allowed to struggle.
@snicky58
@snicky58 9 ай бұрын
I just love Zion's mom! She is a rare treasure.
@karyannfontaine8757
@karyannfontaine8757 Жыл бұрын
These people and their families are great, in spite of the genetic conditions affecting them. Much respect for all of them.
@jennamarie035
@jennamarie035 10 ай бұрын
I wrote about Lauren, but then I met Zion and Michelle and deleted my comment because every single one of these people are amazing and inspiring! Thank you so much for this video and for giving us a chance to meet some pretty fantastic humans ♡
@karenrollins1469
@karenrollins1469 11 ай бұрын
Kids like these always bring you back to reality no matter all the difficulties in my life I'm still blessed to have pretty good health at 66, all these kids are inspirations ❤
@denisejames9072
@denisejames9072 11 ай бұрын
My dad was a shriner for years .Drove his little car in parades. As he aged, he could not drive his car so they had an old pickup truck repaired it and he drove that for a few years. He was so happy donating his time at a special events to raise money for his hospital. This is a great plqce to donate.
@nicolejohnson5546
@nicolejohnson5546 11 ай бұрын
Zion’s mom and wrestling coach are two of the most wonderful people on earth.
@brit1945
@brit1945 10 ай бұрын
Aside from the obvious blessing each child/ young adult is ,I’m struck by the love, strength and resilience of the incredible Mothers ❤
@annarichter3690
@annarichter3690 Жыл бұрын
I love Zion's mom!
@Kez81
@Kez81 Жыл бұрын
I have an extremely rare condition called transverse myelitis....it affects 1-8 people per million. It can happen to anyone at any age but research has shown that it happens ages 10-19 and 39-45 for some reason. I was 39. It stole my life as i knew it from me, it left me partially paralysed from the waist down with extreme nerve pain in both hands i also have lots of other smaller complications too. There is no cure. I look like the same person who just needs support to walk anywhere but inside im still grieving for the person i was.
@riley5541
@riley5541 Жыл бұрын
I hope you can find happiness and joy in yourself one day. You’re amazing! Keep going
@kimberlybettis8509
@kimberlybettis8509 Жыл бұрын
Thank you for being an inspiration for others! Some times it takes seeing another person fight to live to motivate someone else who is ready to give up❤
@UniqueSunShyne7
@UniqueSunShyne7 Жыл бұрын
Crazy my grandmother had this 😢 came out of nowhere
@Kez81
@Kez81 Жыл бұрын
@@UniqueSunShyne7 mine did too. Its a devastating condition.
@carolyndavison6095
@carolyndavison6095 11 ай бұрын
God bless and keep you strong as you go through life. 🙏🙏🙏🙏💙💙💙💙💙
@trishswinbanks4232
@trishswinbanks4232 11 ай бұрын
You all have an inner beauty that travels further than skin deep. I now have cancer which isn't curable but managed I now have a different out look on life...Took 60 years and feel fortunate thank you all of you may your spirits be hi and you all are loved so much ❤❤
@markalexander3659
@markalexander3659 11 ай бұрын
These people make me feel kind of ashamed for sometimes feeling sorry for myself for my chronic conditions (pancreatitis, epilepsy, chronic pain, type 1 diabetes) which seem very small in comparison. These people are so inspirational.
@WolfHeartMedia
@WolfHeartMedia 11 ай бұрын
Don't feel ashamed, everyone's struggles are valid! Doesn't matter if you're drowning in 2 inches of water or 100 feet, you're still drowning. I've felt the same sometimes though, keep your head high and keep going
@jenpierce2385
@jenpierce2385 10 ай бұрын
I feel the same.. it's weird bc I have all of the same conditions except diabetes but I do have crippling endometriosis, migraines and fibromyalgia.. it is tough to move most of the time and I'm so exhausted.. try to hang in there.. God bless ❤
@TheoRae8289
@TheoRae8289 10 ай бұрын
​@@jenpierce2385endo and fibro? Oof. Endo is so hard to get diagnosed, too.
@roseraindropsinger
@roseraindropsinger 11 ай бұрын
This is life changing,I thought I have reason to complain about my health,but wow these are heroes,Im counting my blessings
@jenniferbeasley9966
@jenniferbeasley9966 Жыл бұрын
All of you are very inspiring to me. I to had troubles as a child with a cancer that came to a point of no chance of surviving. I face challenges because of the extreme cancer treatments, but I am alive and watching this makes me realize how lucky I am . You are all so brave and wonderful God bless ❤❤love you all may God be with you all❤
@jenpierce2385
@jenpierce2385 10 ай бұрын
God bless you ❤
@markhaunert5029
@markhaunert5029 Жыл бұрын
Yet there's probably 1000 people right now crying their eyes out because of a bad haircut. These people freaking rock.
@lisacolledge7624
@lisacolledge7624 Жыл бұрын
Man, that's the best comment! Smack...straight in the chops. Makes people think. ❤
@markhaunert5029
@markhaunert5029 Жыл бұрын
@@lisacolledge7624 💯
@trinitycabell7296
@trinitycabell7296 Жыл бұрын
i just was then i thought about my daughter a 1 in 5 million case of Junctional Epidermolysis Bullosa - Severe she got to live for 2 months and was in pain every minute of it she was so stronger than i will ever be
@jennsnook145
@jennsnook145 Жыл бұрын
True..people can be so shallow
@estherwhite-b8r
@estherwhite-b8r 11 ай бұрын
Girls you are the best.😊
@jandedick7519
@jandedick7519 Жыл бұрын
There’s no way that those drugs should cost that much. Look what the drug companies charged for insulin? Insulin is super cheap for them to make but they charge a crazy amount. It’s just plain old greed . How sad that greed and money is more important than lives.
@jenniferbowie2773
@jenniferbowie2773 Жыл бұрын
They made insulin cheaper but I guess as long as you have insurance! My other meds are way more. When I was diagnosed with type one they said I always had to have good insurance and made sure I always had a job. Diabetes is very expensive!
@hopeg02
@hopeg02 10 ай бұрын
It’s big pharma. Look into it it goes way deeper. Many small pharmacies who try to help their patients get cheaper medication are forced to close down
@Jdamenb
@Jdamenb 5 ай бұрын
They do it because they know we have no choice. For example, the same EXACT pair of tires sold by a bike shop is about $25, but sold by a medical vendor for a wheelchair is $600-$800. Same size, material, manufacturer, brand, color, literally identical tires. But one buyet has a choice and the other does not. The one that does not is a lucrative opportunity to make 30x as much or more because they can't just not ride their bike a little longer, and most don't know they can get it elsewhere it's made to seem medically exclusive sourcing.
@cattymajiv
@cattymajiv 4 ай бұрын
It's the American way. The same drugs are cheaper in every other country, but the US allows predatory pricing, so there you are! And what happens when a diabetic loses their legs, and thus their ability to work. Do they lose their insurance too? I swear that country is just a bunch of predators and prey. They need to keep around 70% of the population down and powerless, so the other 30% can get as rich as possible. All the while, fully 80% of the money flows directly to the billionaires who are the only ones with any control. Democracy there is just an illusion. It's just crazy how the popultion has allowed this to happen, and still does nothing to even try to change it. The R wing is on a crazed rampage, determined to wreck it even more, at the bidding of the ultra rich, but the voters and people whom are not R wing crazies just sit there, year after year, expecting somebody else to do something. In this way, the L wing is as guilty as the R wing is. It's a spoiled rotten country that has become as lazy as can be! Shame on every one of them!
@cattymajiv
@cattymajiv 4 ай бұрын
@@Jdamenb Thank you for letting us know! I will remember that! Someday I might need that tidbit of knowledge!
@debbieschwartz557
@debbieschwartz557 10 ай бұрын
The parents and siblings of these people are simply amazing. As are the individuals themselves. ❤
@artsyapple6509
@artsyapple6509 6 ай бұрын
Oh my god, Michelle is adorable. I love her! Shes full of spunk and personality, i truly hope she gets to do one of her dream jobs!
@acrich02
@acrich02 11 ай бұрын
I have a rare blood condition. My mom passed away at 34yrd old from it. There are 8 different strains or types of it. And there is a 50/50 chance of passing it on. I gave it to my oldest daughter but not her 2 sisters. Look up acute intermittent porphyria. My nana had it and gave it to my mom who gave it to me. My daughter is 11 and is starting to have more and more symptoms. She will be starting treatment at our local Cancer center mostly likely within 2 yrs . I've had 7 ports, too many picc lines to count, almost died 4 times in one month, and we have issues when we are in the sun too long. I give all of these stories much love and respect from my family we are definitely one in a million xoxo
@virp_alo
@virp_alo 2 ай бұрын
I’m so sorry for your loss. On the bright side though, the majority of people who have the mutation are asymptomatic. I don’t know if your daughter already had attacks before but if she didn’t there’s a good chance she won’t have one at all.
@KafkaArt
@KafkaArt 6 күн бұрын
So why did you decided to have kids if you knew you have hereditary genetic disease? It's not only very irresponsible but albo very cruel in my opinion
@jcspider7259
@jcspider7259 11 ай бұрын
For those curious to find additional information about what is affecting the boy in the first story (Levi), the name of the disorder is "Jansen Metaphyseal Chondrodysplasia".
@oliviaacosta6239
@oliviaacosta6239 10 ай бұрын
All these children are so amazing. They have wonderful support systems.
@yomigonzalez9870
@yomigonzalez9870 10 ай бұрын
Lauren speaks like an old soul. What an amazing young lady. EtA: Laurens mom is also so strong and amazing.
@erinthesystem9608
@erinthesystem9608 10 ай бұрын
Thank you for this. My cousin married a young woman with a rare condition which causes her to grow tumors everywhere. She is constantly needing operations, to go into and out of hospital regularly. My aunt- her mother-in-law- says every gift Meghan gives them is experiential: things like going ziplining, things which create memories. She knows her life could end at any moment- as can any life- but, being keenly aware of this, she knows how to make the most of her time in a way that not all of us do. Anyway, Meghan seems to be an excellent daughter-in-law and wife, and I wish I lived close enough to know them all better. *- I loved Zion's(sic?) quote: "Haters are your biggest fans." (It's secretly true, or they wouldn't be so bothered by you.)
@danirocket21611
@danirocket21611 8 ай бұрын
I feel awful for Carly..... FOP is a torture sentence
@JOSHUACHIOCCI
@JOSHUACHIOCCI 12 күн бұрын
Neurofibromas?
@renayperrell
@renayperrell 8 ай бұрын
the things these people have in common are that they are all so grateful to be alive. their positive outlook on life is so humbling. despite all the challenges they face, they embrace life and are all so happy.
@ginahouseholder2747
@ginahouseholder2747 10 ай бұрын
My son was born with congenital adrenal hyperplasia which is rare but not nearly as rare as these folks! His is like 1 in every 19,000 babies born! I was so confused and angry when I found out bc back then (20 years ago) there was little to no research or info to be found, no cure, only management! These people’s determination to live a good life despite their challenges is truly inspiring!
@heididepotter8136
@heididepotter8136 11 ай бұрын
Some of these conditions look so painfull. I m so with them and sending them all the love Imagine beeing hungry all the time, must be a sad hollow feeling
@valeriecross5879
@valeriecross5879 11 ай бұрын
Sweet lil Isla laying her head on her mama shoulder as mama was crying! Sending love and prayers to every child and their families on this video🙏🏻❤️! Love in Christ from Alabama USA
@Linda-vd9sv
@Linda-vd9sv 10 ай бұрын
Why do you feel a need to shove your imaginary god friend into others? Get help
@Jessicahurst1
@Jessicahurst1 10 ай бұрын
This is what should be on television and in schools. Just amazing and inspiring ❤
@jeniferburton5235
@jeniferburton5235 9 ай бұрын
Lauren! Wow, absolutely fascinating and mature beyond her years. Her attitude is remarkable. I hope she lives many years and commend her for wanting to become a nurse.😊
@joannkazarian1425
@joannkazarian1425 8 ай бұрын
I laughed, I cried, and it makes you really stop and think about what goes on with some people. God bless all of the people in this video. It's something that has truly touched my heart ❤️ ❤❤😊😊😊
@lisajeter9511
@lisajeter9511 11 ай бұрын
Iyla is beyond adorable and I pray she lives a full life!
@annamcfarlane4675
@annamcfarlane4675 5 ай бұрын
One thing they all have in common is that they all have such beautiful souls. They live with incredibly difficult conditions and though they go through this, they seem to be more positive amidst their trials and tribulations. We can really learn from them because they are more beautiful and humble than most people in the world.
@thecraftycyborg9024
@thecraftycyborg9024 11 ай бұрын
I was very recently informed I’m incredibly high risk for Pulmonary Hypertension and I’ve been assigned to a pulmonologist who specializes in treating it. Right now, I’m good. The scarring in my lungs appears stable and I don’t yet have PH, but I know it’s a very high chance down the line. For now, my lungs are scarred heavily from a combo of blood clots in my lungs a few years ago and an idiopathic issue. So I’m on oxygen now and wow, the difference! My life is so much better with it!
@JenniferChapin-li9eu
@JenniferChapin-li9eu 11 ай бұрын
They are all adorable and an example of what we should be. Kindness, compassion and innocent souls.
@patriciafrancis9134
@patriciafrancis9134 9 ай бұрын
I love the part with Zion's Mom. She knew she met her son and I think that's so beautiful for both of them.
@ALA9E
@ALA9E Жыл бұрын
All these amazing parents, going above and beyond ❤
@whaecK
@whaecK 9 ай бұрын
if i would have half of the optimism, power and drive as any one of them, i would be very happy person i think every single story brought tears to my eyes, such beautiful people, and all the parents doin a incredible job its heartwarming❤
@franhenry1719
@franhenry1719 11 ай бұрын
Lauren's drugs cost $75,000 a month. Hooray for health care in the U.S. This is a truly well done documentary, so touching. Thank you.
@rosameryrojas-delcerro1059
@rosameryrojas-delcerro1059 11 ай бұрын
No, she is in CA, and her health care will no longer be covered by state child health programs once she is 21. Insurance will likely not cover it after that. I am from CA, I lost my health care at 21 also. I have epilepsy and can barely afford my medications and I am in NV now. Each state has its own programs, but NO UNIVERSAL health care in the nation. Insurance companies here are predators, they love the chronically ill. We are profit machines, but if you are too expensive, (like 75k per month) no one will cover you because they will be losing money.
@projectionv.accountability1010
@projectionv.accountability1010 10 ай бұрын
Then throw a fit about illegal immigrants who literally steal resources from people who NEED them. Take care of our families first. Period.
@hadla
@hadla 8 ай бұрын
It’s ridiculous what medical companies charge for their drugs. I don’t understand why they’re so greedy.
@FlowerPup_AZ
@FlowerPup_AZ 8 ай бұрын
It's disgusting that it costs that much. Absolutely nobody can afford that.
@MrShadow-qz9xj
@MrShadow-qz9xj 7 ай бұрын
​@@hadla issue is the research costs a lot of money, nothing is free. Scientists spend a lot of money and time on their education, so they expect to get the money back, and then some. That said as drugs are on the market they should get cheaper and they don't.
@phylisandrews9237
@phylisandrews9237 11 ай бұрын
What a good Dad! So positive and comforting. ❤
@Lsaizul
@Lsaizul 9 ай бұрын
All these people are amazing, but an extra special thank you to Carli and her parents for raising puppies for Canine Companions. I have Arizona V, We graduated February 2023 South Central Region. Your hard work is greatly appreciated!!!
@chichi9851
@chichi9851 9 ай бұрын
What a great doctor Levi has- perfect personality for a pediatric specialist!
@ciscokid0110
@ciscokid0110 9 ай бұрын
Every one of these kids and young adults are amazing. I am 64 and I can’t imagine going through what they do. I also think that every one of them would be a wonderful friend. Thank you for showing what we should all be doing. Living each day to the best of your ability. You and your families rock!❤
@jenpierce2385
@jenpierce2385 10 ай бұрын
Natalia is so strong and she's so intelligent.. God please bless these amazing kiddos ❤
@MaiaMendez12
@MaiaMendez12 11 ай бұрын
Levi stole my heart ❤
@НикаФракийская-ч7с
@НикаФракийская-ч7с 11 ай бұрын
Zion's mum is alsom, beautiful soul does she have, bless God this woman!
@Tanya-pw6nd
@Tanya-pw6nd 3 ай бұрын
Omg I'm in love with Michelle!!! She was truly blessed with an amazing older sister...you can feel the love and bond between them and I love how her sister is with her.
@danirocket21611
@danirocket21611 8 ай бұрын
I have some health conditions that get frustrating sometimes BUT this group of kids reminds me that there is always something to be grateful for because if they find joy i sure as hell should
@tinaparsons8823
@tinaparsons8823 Жыл бұрын
He is such gorgeous boy he knows what he wants in life pure champion has a great spirit
@doclewis8927
@doclewis8927 Ай бұрын
Zion is a well-spoken young man. He should look into giving motivational speeches as well as chasing his world-wide goals. I'm certain he's an inspiration now and he could touch so many lives too. Good luck, young man!
@abcdea01
@abcdea01 10 ай бұрын
Omg i freaking love Levi’s energy!!! He’s so intelligent!!
@hayleykb
@hayleykb Жыл бұрын
I have a rare dwarfism as well called Geleopyhsic dysplasia and currently there is about 50 documented cases. My older brother and I were the first documented siblings with G.D. Sadly my older brother passed away due to complications from heart surgery a couple years ago
@ALA9E
@ALA9E Жыл бұрын
So sorry for your loss🥺
@Lyraa357
@Lyraa357 Жыл бұрын
I know he is cheering you on from Heaven. Trust that you will be reunited.🤗🤗🤗
@kaydublin5164
@kaydublin5164 11 ай бұрын
😢
@SueP-D
@SueP-D Ай бұрын
R.I.P. to your amazing brother and much love your way ❤
@elizabethaurelio-ortiz3227
@elizabethaurelio-ortiz3227 5 ай бұрын
People who complained too much without any reason should watch this video!
@daytripper0912
@daytripper0912 11 ай бұрын
Zions mom is an angel. ❤
@user-es3zh3jk5o
@user-es3zh3jk5o 10 ай бұрын
The things they have in common are so incredible, they're all smiles and happy
@LeahMarshals22
@LeahMarshals22 11 ай бұрын
It’s truly a wonderful thing to get the chance to meet the people living above their disabilities. It’s inspiring to see them living their lives overcoming and not “with” disability. Thank you for sharing your stories! ❤
@TheoRae8289
@TheoRae8289 10 ай бұрын
It's not overcoming it's working *with* those obstacles. Framing it as overcoming turns their stories into the sort of inspiration p*rn that gets weaponized against people with invisible disabilities or mental health struggles.
@dennisbouma37
@dennisbouma37 9 ай бұрын
Wow! Michelle's got me crying... What an angel❤❤❤
@tatianaflores1926
@tatianaflores1926 11 ай бұрын
I am currently caring for my niece who has the very rare brain disorder called lissencephaly. She was also born with Pierre Rubin syndrome. Her life expectancy was 2 years , this August she will be 25. Her brain is that of maybe a six month old, is not mobile. Verbal has a tube for feeding, however, eats by mouth, smooth foods because she likes it and it makes her happy. My sister who is her mother went into liver failure about 10 years ago. My brother gave her half of his, and it was very successful at the time, however she is now in liver failure again and in the United States you can only have one live donor transplant and since she already had some life-saving extension, she is very low on the list for a new liver. That is the only reason she’s currently in my care. She is the happiest ,self, soothing, self, entertaining miracle, Angel, ever we are blessed to have her in our family and count our blessings daily.
@mstwelvedeadlycyns
@mstwelvedeadlycyns 11 ай бұрын
God Bless ❤❤❤❤❤
@barbaracasey2482
@barbaracasey2482 8 ай бұрын
There are some amazing people in this world who show such courage and resilience. I am humbled by them.
@marybodnar4749
@marybodnar4749 7 ай бұрын
What an absolutely amazing child Levi is. His personality just shines!❤
@jadie1234a
@jadie1234a 11 ай бұрын
Isla! I LOVE her! OMG!!!! Such a princess!
@cwavt8849
@cwavt8849 11 ай бұрын
FIP, literally watching your body to turn to stone, must be the most heart wrenching disease. Every day, you lose more. My heart breaks for these people. And swells with pride with the way that they push through.
@oliviaacosta6239
@oliviaacosta6239 10 ай бұрын
Lauren I’m a nurse and I know you will be an excellent and compassionate nurse
@Marie-m2m
@Marie-m2m 11 ай бұрын
Ila is sweet .she ws so concerned about her mommy being sad .bless her heart and God her and her family.
@tessablauvelt8686
@tessablauvelt8686 11 ай бұрын
Me and my mom are carriers for a rare genetic disorder called Allen Herndon Dudley Syndrome and last I knew we were the 26th family in the world. My son got diagnosed when he was about 7 yrs old which lead to my little brother's diagnosis some months later.
@5p674
@5p674 Жыл бұрын
Levi is so funny and likable.
@juliewilliams1441
@juliewilliams1441 9 ай бұрын
Michelle seems so sweet. I pray she’s happy always. God bless that sweet girl!!
@brendawillard5273
@brendawillard5273 10 ай бұрын
My grandson died when he was 15 years and 2 months. He had pulmonary arterial hypertension. 😢 Y prayers are with you Lauren❤
@RachelMLinn
@RachelMLinn 6 ай бұрын
Zion was on AGT 2023 and had my entire family in awe. He’s an incredible young man.
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