Thank you so much for sharing. I just found out my 2 year old son has Noonan syndrome and it’s so nice to hear others that are living with Noonan syndrome speak a bit about it. It can be a scary process for the parents in the beginning and it’s nice when others share their stories.

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

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 😁

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 😊

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!

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

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 ❤️😊

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)

Thank you for sharing, so inspiring...you are so strong... I wish everyone with this condition get to see this video

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

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.

Thank you for sharing! I am a teacher who will share this with my students! You are sooo amazing , strong, and inspiring!

Thanks for sharing your story My daughter is noonan I'm grateful for finding your channel ❤️

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.

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.

Thanks for sharing your story, good luck.

Thanks for sharing. My nephew has Noonan's and it's good to learn more about it from you so thank you very much ❤️

Thank you for sharing

I wish you good luck with your heart surgery💗

U r so beautiful 😍 🤩 . Thank you for sharing ur experience

I was very interested in watching your video because videos about life experiencies with Noonan Syndrome are very rare. I have Noonan Syndrome as well but very different symptons. I was diagnosed very late, when I was 12 years old and they diagnosed me the same day with slow growth because my hypophysis doesn`t work very well. So I got growth hormones and now I´m 5.2 (I´m from Germany so we would say I´m 1,6 Meter ;) ) I wish you good luck with your heart surgery. I think it would be great, if more people would share their experiences with deseases like genetic syndromes especially rare deseases because it can help people to not feel alone. Another Quesion: At about 10:00 you say down and noonan syndrome are sharing some symptoms. I always thought Turner and Noonan are sharing a lot of symptoms but down syndrome is very different in my opinion... (Oh and sorry for making some mistakes in this text. I have never been good at foreign languages)

Thank you for sharing! My 10 month old is going through genetic testing right now and they think it may be noonan syndrome.

I have autism & learning difficulty

Good to hear from you ...Lets make a google forum so that everyone can share their story 😁

I love learning more about noonan syndrome I didn't know I had it til I was like 10..

I was diagnosed at birth with Noonan Syndrome and now I suspect I am autistic and idk im scared

I also have Nooan syndrome to

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

I got diagnosed with Noonan syndrome when I was 32.

I I have it

Do you have learning

Hi fellow noonei