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@elizabethdavenport654 Ай бұрын
Well done. Wonderful video x
@npuk1991 29 күн бұрын
Thank you for watching Elizabeth, we miss you!
@entertainingvideos9442 Ай бұрын
Can you please help by providing the expert opinion suggestions for supportive care , for example what type of equipment we need keep in home? and what type of therapy or exercise we need to adopt to manage the symptoms, also please mention for routine checkup and medical test
@OscarGarman 4 ай бұрын
Beautiful memory of this little girl full of Invisibility these parents are well-known inspired by their girl Magnificent architecture in this house and Lovely view of their back garden Hollie is now grown-up like a Young teenager she had a really Wonderful life her progress went through in Sweet company 😊 she has to be very Confident to process her challenging work 😂❤😅🎉😢
@mandyrobinson8353 Жыл бұрын
Nice one Glynn ❤❤
@xxxxxbatch Жыл бұрын
Hey buddy! I cannot wait to give you and your parents a giant hug when I see you this year!
@vickenkodjaian5265 Жыл бұрын
You are very funny Alec.
@berlin3x6 Жыл бұрын
🤩🤩❤
@ishakkocatepe7658 Жыл бұрын
hey ihave the npc1 type c pleasease cut your please give me a list of the possiebel consuquentes of having the npc1
@clairebordeaux Жыл бұрын
My daughter has Type B. I pray that she survives into adulthood. NPD is so devastating. You did well with your speaking. 💖
@bradbattles5312 Жыл бұрын
I'm a parent of an NPC patient. The information in this video has helped me understand why my spouse and I don't hear many words from our daughter. Thank you Cara for sharing.
@jrsanttos Жыл бұрын
I am from Brazil. My stepdaughter has this disease. Thanks for the content. It has little information for us to inform ourselves
@npuk1991 Жыл бұрын
Hello there, thank you for watching but we are sorry to hear you didn't find this patient story informative. May I suggest our website, here: www.npuk.org or perhaps the following video instead: kzbin.info/www/bejne/rGq8qXSNrd2oh6s We wish you and your family the best: we have links with wonderful support groups in Brazil, so please do stay in touch!
@Lisztop1 Жыл бұрын
Excellent in unconventional expression of the inner pain of the sufferer and appropriate in guiding others in their reactions and attitudes. In short a little open offered kindness goes such a long way.
@npuk1991 Жыл бұрын
Thank you Timothy, very well put and we certainly agree. Appreciate the support!
@harrykoujaian6851 Жыл бұрын
Awesome job Cara
@npuk1991 Жыл бұрын
She's incredible! Thanks for watching
@berlin3x6 Жыл бұрын
Wow, magnifique, great work! 🤩❤🩹
@npuk1991 Жыл бұрын
Thank you, how kind!
@tejasri098yasani7 Жыл бұрын
I to have a baby suffering with this disease
@berlin3x6 2 жыл бұрын
Amazing work! ❤
@npuk1991 2 жыл бұрын
thank you for the support!
@mandyrobinson8353 2 жыл бұрын
Special memories of beautiful friends no longer with us
@AL-ym2mm 2 жыл бұрын
😅 ᴘʀᴏᴍᴏsᴍ
@meabhdoolan890 2 жыл бұрын
Well done Graham ❤
@npuk1991 2 жыл бұрын
He did so well! Thanks Meabh
@QuintessentialKeygirl 2 жыл бұрын
Bless your heart James - and your family. ❤
@r.i.tutorial8264 2 жыл бұрын
My baby is diagnosed with NPC Type 2 and she's now 9 months old. How can we take care of her?
@npuk1991 2 жыл бұрын
Hi there, thanks for getting in touch - we will be happy to provide more information on how you can better support your child during this time. Please contact us at [email protected]
@r.i.tutorial8264 2 жыл бұрын
@@npuk1991 thanks a lot
@r.i.tutorial8264 2 жыл бұрын
@@npuk1991 I regularly follow it.
@tejasri098yasani7 Жыл бұрын
Hi sir I to have baby suffering with this niemann pick type b disease is there any treatment
@謝麗金 2 жыл бұрын
巫爸爸巫媽媽你們好偉大哦!經過這麼多的考驗.還能走出來分享.用生命在付出給你的家的小宝貝.你的用心讓全世界都看的到。
@dusssss631 2 жыл бұрын
Love the music!
@npuk1991 2 жыл бұрын
Thank you, fantastic work from Scott Ampleford, Badger & Lilliput!
@ЭсмираГасанова-д9ц 2 жыл бұрын
на душе пустота после просмотра...это очень тяжело...мой сын тоже болен NPC....я незнаю как мы жить с этим страшным недугом
@chanabayla1823 2 жыл бұрын
Most cases hit mostly Jewish ashkenazi. We automatically get tested for most of the "Jewish" dieases. Doesn't matter if you are Jewish or not u have a responsibility to me as a parent to get tested as most of these dieases are fatal
@williamspaul8064 2 жыл бұрын
Meeting Dr Dagba on KZbin has really been one of the best day of my life after years of suffering I have been finally cured from Heart Disease , Thanks doc God bless you.
@craigburns5548 3 жыл бұрын
Awesome n so capturing xx Love to all ♥
@npuk1991 3 жыл бұрын
So pleased to have you on this project Craig! We hope Alfie is doing well ♥
@craigburns5548 3 жыл бұрын
@@npuk1991 ♥
@jana-mk4ri 3 жыл бұрын
Where I can find places for taking care of this disease
@raee_gachaIlROADTO 3 жыл бұрын
Hello everyone, I played Zoey in this when I was 7… I SOUND WIRED 😳😳😳😳😳😳 Not to mention a bad actor
@npuk1991 3 жыл бұрын
Hi Bodhi-Rae, no way you were fantastic!
@medics4rarediseases-m4rd11 Жыл бұрын
we agree! thank you for playing this part and helping us understand@@npuk1991
@MEDMONK13 3 жыл бұрын
THANKS FOR SHARING YOUR STORY
@ІринаТ-т9ц 3 жыл бұрын
Все так реалистично. Буд-то переживаещь все еще раз. Даже не зная языка, все понятно и близко без слов.
@YESTOYOURWILL 4 жыл бұрын
Thank you for this my grand daughter was recently diagnosed with this
@mahsayavari176 3 жыл бұрын
Hi What was the treatment?
@YESTOYOURWILL 3 жыл бұрын
Currently she has had no treatment. We just received miglustat and will be starting this to help slow down her progression. We do a lot of praying on her behalf and all the kids dealing with these diseases and disorders. Jesus has really been our source of healing this far. I pray no one else will have to go through what these kids have been through. May God bless you and have mercy on us all
@UmerFarooq-rs3jy 4 жыл бұрын
hy my baby is 2year and you know tretment plieas tel me you have tretment
@danidevic 5 жыл бұрын
Very good information!
@Drhayatahmad 5 жыл бұрын
Thank you so much, sir.
@carlyweaver6718 5 жыл бұрын
💚
@craigburns5548 3 жыл бұрын
Xxx
@goingroundflatearth865 5 жыл бұрын
Great charity get donating guys xx
@gurtejruprai7385 6 жыл бұрын
Hi my 1year old baby boy suffering from Niemann pick A please share ur knowledge with me
@dickmaker5405 5 жыл бұрын
Gurtej Ruprai his gonna die in 5 yrs most can’t survive past 5-6 but I hope u baby boy can be the first to past beyond best of luck❤️
@toystorylover5257 6 жыл бұрын
Very good video! I wish this parent the best in life!
@toystorylover5257 6 жыл бұрын
Thank you for the information! It is greatly appreciated!
@toystorylover5257 6 жыл бұрын
Thanks for the information on Nieman-Pick Type C! It is greatly appreciated!
@npuk1991 6 жыл бұрын
You are more than welcome! For more information you can also visit: www.npuk.org/niemann-pick-disease/
@toystorylover5257 6 жыл бұрын
Very informative! Thank you!
@npuk1991 6 жыл бұрын
You are welcome, make sure you subscribe for more informative videos!
@amirahsarmy 7 жыл бұрын
Hello I am the one who did the interview with John Thank You for letting me do the opportunity to do this Amirah
@npuk1991 7 жыл бұрын
Hi Amirah! It was great to meet you - we hope you and your family had a lovely day! We will share your video very soon! :-)
@npuk1991 7 жыл бұрын
Amirah! The video is finally ready - hope you like it: kzbin.info/www/bejne/j3SqfGmgfceDiLs
@christianrehfeldt7600 7 жыл бұрын
a very good Video. you are so great. together for the figt against Nieman Pick
@npuk1991 7 жыл бұрын
Thank you Christian, we are stronger together!
@christianrehfeldt7600 7 жыл бұрын
together against Niemann Pick und all rare diseases
@tashax2x265 7 жыл бұрын
You are a big inspiration Shona! Me and my whole family have been following you on your team rickshaw adventure! My cousin unfortunately suffers with the same disease and is having a hard time with it at the moment. But watching you is lifting our spirits to raise awareness for this horrible disease. Keep it up girl!