We have two Marfan Grand children,both young adults now,who have followed their dreams career wise and are doing well in their chosen fields, all the best Cohen with your dreams,hope you can make them come true.
What a well spoken young man you are. The part of your heart that makes you a kind, concerned, loving person works better than many others. You are a delight and I send you love and hugs.
My son is 7 and has Marfan Syndrome. He is a spontaneous mutation too. I will show him your video. He thinks he is the only one with marfan. Thanks for sharing your story and raising awareness x
I’m a 28 year old with marfans (my mother and all 4 of my siblings also have it) but we have been ‘lucky’ in the sense that our gene has only effected our eyes so far, I’ve had both of my lenses removed as they were dislocating, but I also have my heart scanned every year to make sure nothing ever goes wrong. Marfans can feel really isolating, but it’s so nice to find others who have the same struggles. ❤
What An amazing young Man Cohen I think you can do anything you put your mind to, look out world here comes the next great rocket scientist, God Bless you and your Mama.
What an amazing young man. I'm not sure why TH-cam recommended this video but I'm glad it did. He is really a special young man. Lifting you both up in prayer. I know it's 3 years later so I pray you both are well and he's working on achieving his goals 😊 may God continue to bless you both 😊
Thank you so much ♥️ Cohen is headed to high school next month. He’s still absolutely amazing. He will be undergoing a complete spinal fusion in October due to rapid deterioration of his scoliosis. We appreciate your prayers so much!
This video came up out of the blue in my recommendations and I am so glad I watched. My 14yr old daughter Annie has severe scoliosis and will be getting a major surgery in the near future. We both were shocked when we heard your son's name...if Annie had been a boy the name I picked was Cohen!! I've never know anyone who has the name and Annie wishes it was her middle name "just to be cool". Your Cohen is very articulate and it's wonderful to see he isn't letting Marfans hold him back from pursuing his interests. Annie is also very tall, similar to Cohen you wouldn't necessarily know she has any health differences, but she too has to be extremely careful when it comes to physical activities. Thanks for sharing Cohen's story even though I found it after 3yrs. Annie and I hope you're both doing well and in good health.
That’s so awesome that you were led to our video. It was meant to be ♥️ we have much in common. Cohen will be getting scoliosis surgery October 10th. We’re working on getting stronger and building muscle. Hopefully recovery will be a breeze for them both 🙏
@@beautifullybroken9373 Wow...Talk about things in common. Annie was scheduled to have a full spinal fusion in the beginning of this month. Her orthopedic surgeon postponed it because Annie needs more physical therapy(3 times a week)to build more muscle in her lower back and unlock her hamstrings. I'm so happy it was delayed because her pain isn't a daily issue and the thought of a 6mo-1yr recovery is hard to willing put her through. We recently found out Shriners Hospitals cover the Tether surgery and I don't know if you're familiar with it or if Cohen is a candidate but I highly encourage you to research the procedure. We have a appointment with Shriners in 2wks and are hoping Annie will be able to have the Tether w/a 3mo recovery vs a complete spinal fusion. Plus with the Tether it won't limit mobility so you can still bend and twist.
I have a daughter with marfans she is 59. Has had heart sugery and opperation on her feet. She is very well educated and is a great armchair sports fan thanks for sharing
Either career you decide is awesome. I’m a pet lover myself and have 6 dogs, two cats, several chickens and a Pygmy goat and a fairing goat. If my grown children have their way we will have a pet cow. Lol. I think we need more nasa scientists and definitely need more veterinarians. Lol. Either career you decide you will definitely make the world a better place!!!!
I’m 20 and have Marfan syndrome and when I was in the hospital back in June with Afib some of the doctors didn’t know what Marfan syndrome was, it’s definitely not well known
After a 12 hour flight it's been 10 days and I can walk up 2 flights of stairs without a problem and stand up for 45 minutes without a problem. But, when I move slow to brush my teeth and shave my face then my legs and head feels swimmy like a gravitational pull. Have you heard of cases like this? Or maybe my situation isn't really related to this. Just doing research based on what many people feel. I don't have balance issues or rocking issues I only have gravitational pull issues.
@@beautifullybroken9373 no improvement at all. It's been two weeks today. I feel gravitational pull/moon walking/swaying. No dizzy or headaches and I can still run up a long flight of stairs without holding the rail. Also, Mines don't get worse through out the day it stays the same. I don't consider I feel rocking I guess because Mines came from a 12 hour flight not a boat. But this moon walking is really making me nervous. I want to go to New York if this doesn't resolve in 6 months. I understand each patient is different I hope he is able to reduce or remove this. I consider myself on a scale of 2.
@@edwingarcia9626 try not to freak out yet. They say it can last a few weeks for “normal” people before it is considered a chronic form of MdDS. I say if this lasts longer than a month start making preparations to go to NYC. The sooner you get on top of it the better. My friend went within a couple months of getting it and got 100% better after going to NYC. I got about 50%. I haven’t felt solid ground in 2.5 years. Eventually you “adjust” to the weird sensations and learn to co-exist, but it’s far from a new normal and some days are definitely harder than others. MdDS does seem to cause vestibular migraines (no head pain) which makes it even harder to recover, so keep that in the back of your head to tell your doctors if this becomes a chronic thing for you. Praying it won’t!
@@beautifullybroken9373 oh yeah I'm glad you got better! I haven't got a headache in years and I can still walk for miles. However, did your friend have a mild case? And when she got 100% better does that mean she basically does not feel barely any symptoms anymore? I never actually feel dizzy.
@@edwingarcia9626 with vestibular migraines you don’t get headaches. She was definitely a milder case than me for sure. I can also walk gift miles. With MdDS being in motion is what makes us feel at our best (not normal by any means)
Hello thanks for All amazing awesome vlogs could I please say all your sons best amazing awesome big brothers ever and all your daughters best amazing awesome big sisters ever and all your sons best amazing awesome little brothers ever and all your daughters best amazing awesome little sisters ever could I please be all your sons best friend ever and all your daughters best friend ever and all your family best friend ever
Hi, I'm cohen!
We have two Marfan Grand children,both young adults now,who have followed their dreams career wise and are doing well in their chosen fields, all the best Cohen with your dreams,hope you can make them come true.
♥️♥️
What a well spoken young man you are. The part of your heart that makes you a kind, concerned, loving person works better than many others. You are a delight and I send you love and hugs.
So sweet. Thank you
I love this kid. God bless you, young man. I will be praying for you and your family.
My son is 7 and has Marfan Syndrome. He is a spontaneous mutation too. I will show him your video. He thinks he is the only one with marfan. Thanks for sharing your story and raising awareness x
You are so very welcome ❤️
Cohen is so smart and precious! I hope he gets to achieve all his dreams.
Sarah I hope so too ❤️
This is a great informational video. Thank you Cohen (sp?) for enlightening us. Thank you Rachelle. Y’all are awesome!! Love ya!!
Thank you Cathe❤️ You spelled his name right :) love you too
I’m a 28 year old with marfans (my mother and all 4 of my siblings also have it) but we have been ‘lucky’ in the sense that our gene has only effected our eyes so far, I’ve had both of my lenses removed as they were dislocating, but I also have my heart scanned every year to make sure nothing ever goes wrong.
Marfans can feel really isolating, but it’s so nice to find others who have the same struggles. ❤
That video was amazing and so informative!!! It will help families and children. Great job!!!
Thank you my sweet friend❤️
What An amazing young Man Cohen I think you can do anything you put your mind to, look out world here comes the next great rocket scientist, God Bless you and your Mama.
Love this. God bless you as well ♥️
Outstanding young man 🤩🤩🤩💖💖
What an amazing young man. I'm not sure why TH-cam recommended this video but I'm glad it did. He is really a special young man. Lifting you both up in prayer. I know it's 3 years later so I pray you both are well and he's working on achieving his goals 😊 may God continue to bless you both 😊
Thank you so much ♥️ Cohen is headed to high school next month. He’s still absolutely amazing. He will be undergoing a complete spinal fusion in October due to rapid deterioration of his scoliosis. We appreciate your prayers so much!
What an awesome young man!
Thank you.
What an amazing kid!!!
Love him!
Thank you ♥️
Great video! You're such a great advocate for you and your son.💙 so much great information!
He's adorable!
Life Rocks thank you ❤️
so precious and beautiful boy.
Awe, thank you
This video came up out of the blue in my recommendations and I am so glad I watched. My 14yr old daughter Annie has severe scoliosis and will be getting a major surgery in the near future. We both were shocked when we heard your son's name...if Annie had been a boy the name I picked was Cohen!! I've never know anyone who has the name and Annie wishes it was her middle name "just to be cool". Your Cohen is very articulate and it's wonderful to see he isn't letting Marfans hold him back from pursuing his interests. Annie is also very tall, similar to Cohen you wouldn't necessarily know she has any health differences, but she too has to be extremely careful when it comes to physical activities. Thanks for sharing Cohen's story even though I found it after 3yrs. Annie and I hope you're both doing well and in good health.
That’s so awesome that you were led to our video. It was meant to be ♥️ we have much in common. Cohen will be getting scoliosis surgery October 10th. We’re working on getting stronger and building muscle. Hopefully recovery will be a breeze for them both 🙏
@@beautifullybroken9373 Wow...Talk about things in common. Annie was scheduled to have a full spinal fusion in the beginning of this month. Her orthopedic surgeon postponed it because Annie needs more physical therapy(3 times a week)to build more muscle in her lower back and unlock her hamstrings. I'm so happy it was delayed because her pain isn't a daily issue and the thought of a 6mo-1yr recovery is hard to willing put her through.
We recently found out Shriners Hospitals cover the Tether surgery and I don't know if you're familiar with it or if Cohen is a candidate but I highly encourage you to research the procedure. We have a appointment with Shriners in 2wks and are hoping Annie will be able to have the Tether w/a 3mo recovery vs a complete spinal fusion. Plus with the Tether it won't limit mobility so you can still bend and twist.
I have a daughter with marfans she is 59. Has had heart sugery and opperation on her feet. She is very well educated and is a great armchair sports fan thanks for sharing
That’s awesome and encouraging ♥️ Cohen will be getting his first Marfan related surgery in October. Total spinal fusion.
Either career you decide is awesome. I’m a pet lover myself and have 6 dogs, two cats, several chickens and a Pygmy goat and a fairing goat. If my grown children have their way we will have a pet cow. Lol. I think we need more nasa scientists and definitely need more veterinarians. Lol. Either career you decide you will definitely make the world a better place!!!!
😍🥰😘
Fantastic advocacy - good job, Cohen :) Your story will inspire other people with Marfan syndrome and help to educate us all about it.
Polly Moyer thank you ❤️❤️❤️
You da bomb, lady
He’s a sweetheart!!!
Thank you
I have the sister disease to Marfan, Ehlers Danlos Syndrome my sibling and I both have it. We got diagnosed as adults
I’m very familiar with EDS. Hope you are doing good♥️
nice video
MisterTracks thank you!! 😃
I’m 20 and have Marfan syndrome and when I was in the hospital back in June with Afib some of the doctors didn’t know what Marfan syndrome was, it’s definitely not well known
Michael :Schmalenberger it’s a darn shame. Exactly why awareness needs to be thrown out there!!!
Do you know how many people in the world have it? I can’t find it on google
I’m not sure exactly but the ratio is 1:5k and there are 7 billion people in the world. Never was great at math, lol
I think it would be 1.6 million
I've wondered if my oldest has it he's 6'6 his leg length is 38" for pants his ht is all in his legs and his arms are really long as well as his hands
Sounds possible. Has he had an echocardiogram. I would definitely get his heart checked out to be safe.
After a 12 hour flight it's been 10 days and I can walk up 2 flights of stairs without a problem and stand up for 45 minutes without a problem. But, when I move slow to brush my teeth and shave my face then my legs and head feels swimmy like a gravitational pull. Have you heard of cases like this? Or maybe my situation isn't really related to this. Just doing research based on what many people feel. I don't have balance issues or rocking issues I only have gravitational pull issues.
Hopefully feeling better by now? What you describe as gravitational pull sensations vs rocking can still be MdDS. Do you feel better in motion?
@@beautifullybroken9373 no improvement at all. It's been two weeks today. I feel gravitational pull/moon walking/swaying. No dizzy or headaches and I can still run up a long flight of stairs without holding the rail. Also, Mines don't get worse through out the day it stays the same. I don't consider I feel rocking I guess because Mines came from a 12 hour flight not a boat. But this moon walking is really making me nervous. I want to go to New York if this doesn't resolve in 6 months. I understand each patient is different I hope he is able to reduce or remove this. I consider myself on a scale of 2.
@@edwingarcia9626 try not to freak out yet. They say it can last a few weeks for “normal” people before it is considered a chronic form of MdDS. I say if this lasts longer than a month start making preparations to go to NYC. The sooner you get on top of it the better. My friend went within a couple months of getting it and got 100% better after going to NYC. I got about 50%. I haven’t felt solid ground in 2.5 years. Eventually you “adjust” to the weird sensations and learn to co-exist, but it’s far from a new normal and some days are definitely harder than others. MdDS does seem to cause vestibular migraines (no head pain) which makes it even harder to recover, so keep that in the back of your head to tell your doctors if this becomes a chronic thing for you. Praying it won’t!
@@beautifullybroken9373 oh yeah I'm glad you got better! I haven't got a headache in years and I can still walk for miles. However, did your friend have a mild case? And when she got 100% better does that mean she basically does not feel barely any symptoms anymore? I never actually feel dizzy.
@@edwingarcia9626 with vestibular migraines you don’t get headaches. She was definitely a milder case than me for sure. I can also walk gift miles. With MdDS being in motion is what makes us feel at our best (not normal by any means)
My friend male 36 just diagnosed with this has developed a lot of serious problems now is being treated by neurologists in Boston. Long haul..
Ehlers danos syndrome he has
Eardrum piercing intro music.
Good to know. Sorry
Hello thanks for All amazing awesome vlogs could I please say all your sons best amazing awesome big brothers ever and all your daughters best amazing awesome big sisters ever and all your sons best amazing awesome little brothers ever and all your daughters best amazing awesome little sisters ever could I please be all your sons best friend ever and all your daughters best friend ever and all your family best friend ever