It always great to meet others who have it. If there is anything you want me to talk about in future videos then please let me know. x
@aztec11225 ай бұрын
I hope you are doing well. You have a very bright personality and you are beautiful.. Keep smiling always 😊
@nataliekaminski4 ай бұрын
Thank you so much that's very kind of you to say. x
@user-ws3fh4sy8i5 ай бұрын
Thank you for sharing, it is good to hear from a young adult who faces the challenges Noonan's presently. My grandson age 9 was found to have Noonan's soon after birth due to physical charitarians then genetically confirmed. He has had many surgeries BUT doing great including open heart surgery. Challenges in learning, gaining weight, height but very active, happy and living a great life.
@nataliekaminski4 ай бұрын
Wishing you and your family all the best. It can be a challenging thing to get your head around, it sounds like he has amazing support. x
@user-nq2zi2sj8f5 ай бұрын
Thank you for sharing! I am a teacher who will share this with my students! You are sooo amazing , strong, and inspiring!
@nataliekaminski5 ай бұрын
Thank you so much that's very kind of you! What kind of students do you teach?
@RareDiaries75 ай бұрын
Hi Natalie I just subscribed. glad to find another youtuber with noonan syndrome. I have male turner syndrome or noonan syndrome as well. will you continue the awareness videos?
@nataliekaminski5 ай бұрын
Hi! Thank you so much, I will be posting more awareness videos in the future. I've just finished settling into my new place so I'm hoping to get back into the swing of things soon. Is there anything in particular you would like to see from future videos?
@natgutnat10 ай бұрын
Natalie, you are beautiful ❤ and so kind. You are a very compassionate person. I can see it by the way you shared your personal journey here with us to help others in similar situations. Thank you for sharing it. Your video brings hope and light for many many families that are looking for ways to help their loved ones. Thank you so much. Once again, you are beautiful ❤️😊
@nataliekaminski10 ай бұрын
Thank you so much, that's so kind of you! Having this condition the least I can do is share my story and let others know that they aren't alone.
@I-love-books11 ай бұрын
I love this video idea can you please make a part two!!❤❤🫶🫶 ( because I am obsessed with the Twilight Saga)
@nataliekaminski11 ай бұрын
I'm currently planning the books at the moment but a part two is coming.
@I-love-books11 ай бұрын
@@nataliekaminski thank you!!❤️❤️🤗🤗🫶🫶
@jog314611 ай бұрын
When you said “it’s going to be ok” at the end, I burst into tears. Thank you! My son is 5 and has MRAS noonan syndrome, just to see how amazing you’re doing brings us so much hope. You’re amazing. And you’re beautiful. X
@nataliekaminski11 ай бұрын
Thank you! I'm so glad that this video has helped you and I'm sending all the love to your son and your whole family. It takes so much strength to raise someone with this condition and sometimes its hard to find people that understand. Everyone deserves to have hope. x
@paigecarroll9685 Жыл бұрын
Thank you for sharing! My 10 month old is going through genetic testing right now and they think it may be noonan syndrome.
@nataliekaminski Жыл бұрын
I'm so happy you found this video and hope it was helpful. Wishing all the best to you and your family. x
@Sarath------8 Жыл бұрын
Yeah I had read it's a good one. And your presentation is well ❤❤
@michaelball760 Жыл бұрын
I have a little over a month until my surgery. Need to find some books to read 👍
@nataliekaminski Жыл бұрын
Good luck with your surgery, I hope this video helped.
@greenmess Жыл бұрын
I was in a reading slump for many years. After I read "The shadow of the wind" by Carlos Ruiz Zafón in January, I started reading again and I love it. I've read 8 books since January 🙂📚
@nataliekaminski Жыл бұрын
Thats wonderful. I'm so curious to know what books got people out of slumps. I own The Shadow of the Wind but haven't got round to it yet.
@user-nj9zp2fi8p Жыл бұрын
👍 from South Korea
@chilufyachipamba8673 Жыл бұрын
Thank you for sharing, so inspiring...you are so strong... I wish everyone with this condition get to see this video
@michaelball760 Жыл бұрын
I've got a hip replacement surgery coming up in May. I've been thinking about getting some reading in since I'll be out of work for at least 3 months. Use to read quite a bit so hopefully I get back into it.
@michaelball760 Жыл бұрын
My daughter was born with noonan syndrome. She had open heart surgery at 2 months old and a stint put in at 2 years old. She was put on a transplant list after the open heart surgery because she went into congestive heart failure. She miraculously pulled through and improved though. She still has health problems but is a very opinionated 15 year old now 😁
@nataliekaminski Жыл бұрын
It's amazing to hear about everyones different experiences with this condition. I'm so happy to hear she's doing well. 😊
@bookssongsandothermagic Жыл бұрын
Hi Natalie. Great to see that you're doing better now. Thank you for sharing your story. I've subscribed to your channel, and i'm looking forward to more videos, as you back in the swing of it.
@nataliekaminski Жыл бұрын
Thank you! I'm hoping to try uploading at least once a week.
@bookboundweirdo Жыл бұрын
Thanks for sharing your story! 😁 I'm so glad to hear you're doing better! Invasive surgeries are a tough cookie to swallow!
@nataliekaminski Жыл бұрын
Thank you for watching. They really are but as unpleasant as it was it's made me better.
@autumnrose_noseinabook Жыл бұрын
By the way I love this video idea!!
@nataliekaminski Жыл бұрын
Thank you! I'm really hoping to do something similar but as a reading vlog.
@autumnrose_noseinabook Жыл бұрын
I read Wuthering Heights because of Twilight and it ended up becoming my favorite classic!! I love Eyre, too. I’m so thankful for Twilight introducing me to Wuthering Heights because it turned me onto classics and that totally expanded my reading. The reasons why people don’t like WH are completely understandable but the fact that the characters are all unlikeable is part of the point. It’s not a romance like is thought, It’s a story of how revenge and hatred can poison a community through generations. I love the writing and everything about it honestly, including the horrendous characters 😂
@nataliekaminski Жыл бұрын
I can completely see your point and when you look at it that way it's so fascinating to think about, I think the main thing I struggled with is that I'm a very character lead person and when the character is unlikeable I struggle but this is very much a me problem. I'm glad I'm not the only one who reads things because of influence from fictional characters. 😂
@autumnrose_noseinabook Жыл бұрын
I just found your channel! Thank you for being brave enough to share your story with us ❤ I’m looking forward getting watch your videos.
@nataliekaminski Жыл бұрын
Thank you so much. I'm can't wait to get back into this community and uploading more.
@MsReadsAlot Жыл бұрын
Thank you for sharing your story! Glad to see you are feeling better.
@nataliekaminski Жыл бұрын
Thank you! I'm really looking forward to getting back into the community, I've missed it so much.
@dominicchaput6947 Жыл бұрын
I’m glad things are better now!
@nataliekaminski Жыл бұрын
Thank you!
@M-J Жыл бұрын
It’s good to see you Natalie! 🤗
@nataliekaminski Жыл бұрын
Thank you! I can't wait to get back into the community. 😊
@keziasymcox3894 Жыл бұрын
It's so exciting to see a noonie online! My brother was diagnosed at like 3 months, had JMML (leukaemia often associated with Noonans) and open heart surgery etc etc (he's 19 and thriving now!) We are 99% my mum has it but genetic testing is crap and they weren't remotely thorough so she hasn't had confirmation. We used to go to the noonan conference meets annually in the UK, it's just so nice to be surrounded by those who get it! The amount of Dr's who don't know what it is, is mad, so we loved going and not having to explain random life stuff. Thanks for sharing this, it's so nice to see the community I grew up around in more mainstream settings 😊
@nataliekaminski Жыл бұрын
Thank you so much for sharing! I feel like the more we talk about it the more we can educate, I'm so happy that people are finding this video and it's amazing hearing all the different stories and experiences. The amount of time I have had to explain my condition to people is insane. One Dr said that they had never seen the condition outside of a textbook before me, with my recent heart surgery I had so many Doctors and Surgeons in training around me so at least they'll know about this condition. Apparently my case was their exam!
@keziasymcox3894 Жыл бұрын
@@nataliekaminski Yes! My brother used to go to GOSH annually to basically help train Dr's on conditions like Noonans 😅 it's not even that rare statistically!
@RetroGameNerd98 Жыл бұрын
I’ve known I’ve had this condition for awile, I’m trying to motivate myself to not listen to all of the highschoolers bulling me for my height. Many people have told me I will not be successful because of that. This has been told to me my entire life.
@nataliekaminski Жыл бұрын
I'm so sorry that you've had to deal with this that is a horrible situation to be in. Please know that height has nothing to do with how successful you can be, it may make some things more difficult but it doesn't stop us. Just know that people can be ignorant and I hope you know how much protentional you really have. What would you love to do?
@CarlaBelnomeBarrero Жыл бұрын
Natalie, thank you so much for your video. My two and a half years old baby has Noonan Syndrome and she also has needed open heart surgery twice and two keyhole surgeries for the same condition. It is so inspiring seeing you and how well you do. It helps me to see the future from a more positive perspective. Take care! (from Barcelona, Spain)
@nataliekaminski Жыл бұрын
I'm so sorry they have to go through this, I'm wishing them all the best and love to your whole family. It amazes me to see where my video is reaching and I'm so happy to know that this can bring even a small bit of comfort. x
@kimmcenery2597 Жыл бұрын
Thank you for sharing
@jamalgordon8883 Жыл бұрын
Do you have learning
@nataliekaminski Жыл бұрын
Hi. I have dyslexia and mild learning difficulties, I also have some of the signs of Autism and ADHD however I haven't been tested.
@jamalgordon8883 Жыл бұрын
@@nataliekaminski You have learning difficulties
@jamalgordon8883 Жыл бұрын
Do you have Noonan syndrome
@jamalgordon8883 Жыл бұрын
I have autism & learning difficulty
@isabelanardi Жыл бұрын
Hi Natalie, I hope you are recovering well from your surgery. Subscribed to your channel when I watched your video on Noonan syndrome. My brother has it and his situation is very similar to yours, also the age is similar, so it was nice to see you sharing your journey. He too had some heart surgeries, so I couldn't help but worry a bit about you too. I know everything is going to be fine, and I send you all my best wishes. Hope you soon will be posting more videos! Greetings from Brazil ☀
@nataliekaminski Жыл бұрын
Hi! It's so wild to me that my videos are being watched in Brazil, I love hearing about other peoples experiences with this condition and I hope your brother is doing well. My surgery went well and new videos will be coming in the new year. Thank you so much for watching and subscribing.
@bennyboy0077 Жыл бұрын
My son was diagnosed with noonan syndrome. Actually NSML which is a sister syndrome . Happy to find others going through the same journey. Does anyone have ideas to raise awareness? Is there a noonan society? Id like to do a race or triathlon to raise money and awareness
@nataliekaminski Жыл бұрын
Hi, It's great to hear others experience with this condition. Depending on where you live there are some organisations out there. Here are some links - www.noonansyndrome.org.uk/ noonansyndrome.com.au/ www.teamnoonan.org/
@bennyboy0077 Жыл бұрын
@@nataliekaminski thanks. I’m in NYC
@AnnieEclectic Жыл бұрын
Thank you so so much for sharing! We found out my 2 1/2year old son has noonans last week and hearing someone who has actually lived with the divergence really helps. You’re incredibly brave and it’s so reassuring to see how amazingly you’re thriving! 💜✨ xx
@dominicchaput6947 Жыл бұрын
Thank you for sharing! I will be doing research this summer on cardiac defects associated with Noonan syndrome and I've been catching up on the science behind it but you helped me get a better insight as to what it is like living with it. I hope your surgery went well and that you're doing well!
@nicksgirl22 Жыл бұрын
I got diagnosed with Noonan syndrome when I was 32.
@manalabdo21857 ай бұрын
What symptoms did I feel? I knew I had it at the age of 24, but I had no symptoms
@manalabdo21857 ай бұрын
Have her symptoms appeared recently or could I be infected but not have symptoms?
@CatsRul85 Жыл бұрын
Ahhh it's nice finding someone else who has it. I was born with it too (Mom's side for me) I had to have heart surgery when I was little best wishes to you.
@shiningstars2673 Жыл бұрын
All my best wishes and prayers for you ❤my dear daughter was diagnosed with Noonan. She also has severe scoliosis & still strong as she could be 👍 anyways-ur smile brightened my heart -keep smiling
@eternalsunshine333 Жыл бұрын
i love this book currwnrly hosting a spiritual book club and the first book will be this one
@LavineNoonan2 жыл бұрын
Hope all went well and you are having a speedy recovery. My son has a friend 11 yrs old with Noonan syndrome. Thank you so much for sharing your story and journey. ❤️
@nataliekaminski2 жыл бұрын
Thank you for watching, I'm wishing your sons friend all the best. Unfortunately my surgery has been delayed but fingers crossed for the end of July.
@jessicakidd1402 жыл бұрын
I hope your surgery went well and you are getting better and better ❤️
@nataliekaminski2 жыл бұрын
Hi Jessica, thank you so much. Unfortunately my operation was cancelled but I am hoping it will happen end of July. 🤞
@jessicakidd1402 жыл бұрын
Thanks for sharing. My nephew has Noonan's and it's good to learn more about it from you so thank you very much ❤️
@nataliekaminski2 жыл бұрын
Thank you so much for watching. When I searched for information regarding Noonan's I was a little surprised that no one had really shared their experiences. I'm happy to share mine and hope it helps people.
@saramonorchio90492 жыл бұрын
I was diagnosed at birth with Noonan Syndrome and now I suspect I am autistic and idk im scared
@nataliekaminski2 жыл бұрын
Thank you for sharing. I know all this can be scary but you'll get there. My Mum and brother don't have my condition but they are autistic, some days are difficult but sometimes knowing can help you get things in place that will make life so much easier. If you have any questions on anything then please ask.
@milanpaudel91702 жыл бұрын
Good to hear from you ...Lets make a google forum so that everyone can share their story 😁
@nataliekaminski2 жыл бұрын
Thank you. It's so weird before I hadn't really come across other peoples stories and since making this video I've heard so many. 😄