I have Pierre Robin syndrome. I also had a cleft palate and small jaw and my mother fed me through a tube. I am now 50 so there is hope that all will turn out well. I wish you the best with Balin.
mój synek też urodził się z zespołem pierre robin...jesteśmy już po operacji.oboje bardzo żeśmy się męczyli ale teraz jesteśmy bardzo szczęśliwi...marzenia jednak się spełniają!!!!! iwona
Absolutely love this, my heart goes out to all the parents out there who have to deal with complications like these. I am 18 and I too was born with Pierre Robin Sequence/Syndrome. Unfortunately for my parents I also had to have a tracheostomy. I cherish every living moment because I understand (as much as my 18 year old mind can) how lucky I am to be alive. I love my Mum and Dad.
My nephew was diagnosed with this today. Never hearing about this I had to look it up. So thanks for the vid. Balin has beautiful and joyful little eyes!!
Send a kiss to your beautiful Balin! Even our son, Lorenzo, in Italy, was born with Pierre Robin sequence has lived many moments like that. Now, twelve years old, smiles and thank you for being born. I posted your video in my blog on pierre robin
Send a kiss to your beautiful Balin! Even our son, in Italy, was born with Pierre Robin sequence has lived many moments like that. Now, twelve years old, smiles and thank you for being born. I posted your video in my blog on pierre robin. Every day I thank him next ... My hug Paola
great video i just had a little boy two months ago who was born with PRS its a hard time and a long journey but its all worth it! he is waiting to get a tracheostomy & then hopefully we can start thinking about bringing him home in time for Christmas! Balin is beautiful!
Balin is so cute! Brings back many memories for me...my son was born with Pierre Robin.....he's 25 now, so I can barely remember all of the troubles......
I am not Orthodox but there is an orthodox saint that cried one tear. I do not know his name; miracles happen everyday and heroes are just normal people doing the best they can; good luck.
Your story is mine however it went undetected in 1994. The fight for breath, the fight to feed, the fight for life. The tube feeds and late nights gravity feeding. The heart monitors and breathing pads. The endless trips to the hospital.... Josh is almost 16. He was worth every sleepless night, every tear drop spilt, he is alive... He is my strong son and I could not be more proud... as you are of your lil angel Balin...
My inglesh is very bad!Solo decir que la historia de mi hijo es muy parecida a la vuestra, tiene 11 años sindrome pierre robin fisura palatina prematuro 29 semanas tdah hipoacusia bilateral. es un gran hombre, luchador y genial, que va a una escuela normal y que vive una vida feliz y plena como cualquier niño de su edad Continuamos luchando y estoy segura que esta batalla la vamos a ganar Muchos besos y mucha fuerza Gracias por vuestra historia y mostrar al mundo que no estamos solos
hit there how is balin my daughter is doing ok she is 2 in november and due back to cleft surgeon to discuss jaw surgery take care to all your family xx
Such a Beautiful and Blessed Boy! I agree, Balin is very fortunate to have such a wonder family and great support! I also think that the family is very fortunate as well to have an Angel brought into their lives! Love you Balin
Your story reminds me of ours so much! My son (6mos) was born with PRS. He too has opstructive apnea, reflux, micrognathia, ect! Seeing your story was like looking at my life through someone elses eyes. My son underwent the distraction at 8 weeks as we could no longer wait for his airway to improve. Your right..he came out looking totally different,! Because of his age he was in a medically induced coma and intubated while they rotated his jaw forward. Please feel free to email me anytime!
My name is Dolors, I'm from Spain, and my son was born with PRS and palatine fisure. Now my son have 11 years old and if you like can speak with me and ask all you like. Sorry for my bad english. You can dream with beautifull futur with tour son. It's posible!!!!
Truly inspriring. My Neice is 2.5 weeks old today. They say she may have PRS she was born with a small lower jaw, small tongue, and a cleft palate. She is having difficulty breathing that she is undergoing surgery today to open her airway. your video gives me hope. Thank you! This is scary even as an aunty.
She is doing GREAT!! She is 2 months now and was release from the hospital last week. My neices conditions has brought a broken family back together. We all had to learn how to care for her and learn how to place an NG Tube. She will be on a NG Tube until she can eat like others her age. But she is doing well. Thanks :>)
My son too has PRS. Blessings to your family. The journey is long and sonetimes hard....but our children are worth it. My sons story is at the end of his video..it links to a site. Hugs to Balin
My daughter showed me the video of your son. I wanted to cry from the beginning to the end, your son is truly an angel from god. I always believe that God never gives us more than we can bear. your son and your family will always be in my prayers.
Thank you so much for your prayers! Balin had a jaw distraction procedure yesterday. It went very well. Ill add a new video in the next month or so to show that changes his operation has made to the quality of his life. Please thank your daughter for taking the time to watch Balin's video.
cutest boy absolutely.the best kids are those with differences.not differences in looks but differences in heart.the one thing they all do is fight fight fight.don't allow people to think he is any different because it is 100 percent wrong.i think you had an angle i think anybody that have a unique factor is an angle sent from god.he smiles like everyday life is just a normal day.he is absolutely 100 percent true. and you probably don't know me but it doesn't mater.
when he smiled i literally cried to see him so happy .i know you are thinking it is hard but god already turned your life around the day he was born.he also made sure your got the most gorgious boy in the whole wide world.i send kisses and hugs to balin through god so catch them and to balin hopefully everyone will see the strongest boy in the world like i did.
Balin is doing well. He had a jaw distraction surgery yesterday. He'll be in hospital for the next couple of weeks. Thank you for your wishes and taking the time to write.
It's Natalie from Snuggles. I wish Balin all the best recovery and to come back to us real soon. Hope all is well with You and Jacinta. My deepest thoughts are with all of you. Take Care
As one of you carers at Snuggles, your friend & watching this inspiring video of what you, have had to go through in such a short time of your life, i hope in many years to come, you continue with your strength and courage to get you through anything, that life brings at you.!
All my prayers and best wishes go out to you Balin and your wonderfull family of love and support.
my daughter alice may was born with pierre robin syndrome and cleft palate she has been in intensive care twice and thought we would god would take her many times but she is 14 months and on solid foods at last no dreaded ng tube changing thankyou for your lovely video it really gave me strenghth love to you all balin you are a angel xxx.
My son has a lot of these issues also. I have a video on one true media like this. These boys are so strong! He is adorable and I am sure you guys will overcome whatever obstacles lie ahead. Best of luck! -Leslie
The last photo says it all - what a beautiful family you are! I have had the opportunity to meet Balin through a mutual friend (megan) and I must say what a delightful little boy he is. Always smiling. Good luck for Balin's surgery
Mick, there are few people in my life who inspire me and move me to tears. Balin, Cindy and yourself have done both. Balin is the luckiest boy in the world to have parents like you and Cindy and I can only hope that if I ever become a parent, I would be half the person that you are. You have always been in my thoughts and heart and I wish the three of you all the best for the upcoming surgery. xoxo
What strenght you all have. Amazing. I can only guess at the emotional & physical challenges you've all experienced. You have a lovely little boy' - full of smiles, love & laughter by the looks of it : ) Best of luck with the surgeries.
This is an amazing story that reflects both you & Balin's strength of Love & Spirit! May Divine Mother bless & watch over you all. May she also bless your health workers etc with Divine inspiration!
Wow, what an amazing little boy! My daughter Alex and Balin had swimming lessons together last year, I would never have known! He always had a grin from ear to ear! Best of luck with upcoming surgery!!
That was great Mick. I have seen the strength all of you have shown through all the challenges that you have encountered. You are both the most amazing parents, and Balin is just a born fighter. But the most amazing thing... he never complains, you never complain. It's just what has to be done. I can't imagine the hurt and pain of seeing him go through all this... but I do see the joy he brings you. His smile is infectious and I love watching the boys play and laugh together. Good luck.
My 8 month old daughter has PRS and has already had the jaw distraction surgery. Our battle has seemed very similar to yours. Well done in raising awareness and best of luck for Balins surgery.
I have Pierre Robin syndrome. I also had a cleft palate and small jaw and my mother fed me through a tube. I am now 50 so there is hope that all will turn out well. I wish you the best with Balin.
DeresaC1 1 month ago
piękny synek i widok...mama-tata-i zdrowy maluszek.pozdrawiam
44646519 4 months ago
mój synek też urodził się z zespołem pierre robin...jesteśmy już po operacji.oboje bardzo żeśmy się męczyli ale teraz jesteśmy bardzo szczęśliwi...marzenia jednak się spełniają!!!!! iwona
44646519 4 months ago
This is heart breaking and only because I have been through this with my son Andrew who is now 8 almost 9. Brings back memories of a scary time.
mzlissawhip 7 months ago
Absolutely love this, my heart goes out to all the parents out there who have to deal with complications like these. I am 18 and I too was born with Pierre Robin Sequence/Syndrome. Unfortunately for my parents I also had to have a tracheostomy. I cherish every living moment because I understand (as much as my 18 year old mind can) how lucky I am to be alive. I love my Mum and Dad.
Ryan x
TheRedDevil1992 8 months ago
My nephew was diagnosed with this today. Never hearing about this I had to look it up. So thanks for the vid. Balin has beautiful and joyful little eyes!!
2LateIWon 8 months ago
balin is pronounced (bah-len ), its hindu balin was the monkey king, the names meaning is to take half the strength out of anthying that opposes him
(good luck for your son hopfuly he lives a wonderful ful life :) )
sicklad100 11 months ago
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Send a kiss to your beautiful Balin! Even our son, Lorenzo, in Italy, was born with Pierre Robin sequence has lived many moments like that. Now, twelve years old, smiles and thank you for being born. I posted your video in my blog on pierre robin
Every day I thank him next ... My hug Paola
2alipervolare 1 year ago
Send a kiss to your beautiful Balin! Even our son, in Italy, was born with Pierre Robin sequence has lived many moments like that. Now, twelve years old, smiles and thank you for being born. I posted your video in my blog on pierre robin. Every day I thank him next ... My hug Paola
2alipervolare 1 year ago
Comment removed
goodmandilalten 1 year ago
great video i just had a little boy two months ago who was born with PRS its a hard time and a long journey but its all worth it! he is waiting to get a tracheostomy & then hopefully we can start thinking about bringing him home in time for Christmas! Balin is beautiful!
AliceDunn31 1 year ago
Such a familiar story! Our son Mason was born nov 2007. Thank you for sharing such a beautiful video
wescari92 1 year ago
Balin is so cute! Brings back many memories for me...my son was born with Pierre Robin.....he's 25 now, so I can barely remember all of the troubles......
everything will be fine....
sus1955 1 year ago
Hi, thanks for your post. What is you sons Name?
PierreRobinAustralia 1 year ago
So Inspirational! This cutie Pie made my day, may God bless your family and this special little one.
giddyupmama 1 year ago
How is Balin doing now? My prayers are with your family!
horseylover123 1 year ago
This is an amazing video, I love it! These children are angels!!!!
My daughter also has pierre robin with goldenhar syndrome and i wouldnt change a thing because her spirit is phenomenal!
ashleeslate 1 year ago
I am not Orthodox but there is an orthodox saint that cried one tear. I do not know his name; miracles happen everyday and heroes are just normal people doing the best they can; good luck.
SuperBluehaze 1 year ago
my son is also born with pierre robin
he is 16 years old now ,and very intelligent
but i really see the same beautiful baby face
catharine1967 1 year ago
Thank you Dr. Cotton for giving our children a chance in life. My son is 19 now and goes to NJIT in NJ.
shortmemory8 2 years ago
Tears rolling down my face....
Your story is mine however it went undetected in 1994. The fight for breath, the fight to feed, the fight for life. The tube feeds and late nights gravity feeding. The heart monitors and breathing pads. The endless trips to the hospital.... Josh is almost 16. He was worth every sleepless night, every tear drop spilt, he is alive... He is my strong son and I could not be more proud... as you are of your lil angel Balin...
DoomKitty 2 years ago
My inglesh is very bad!Solo decir que la historia de mi hijo es muy parecida a la vuestra, tiene 11 años sindrome pierre robin fisura palatina prematuro 29 semanas tdah hipoacusia bilateral. es un gran hombre, luchador y genial, que va a una escuela normal y que vive una vida feliz y plena como cualquier niño de su edad Continuamos luchando y estoy segura que esta batalla la vamos a ganar Muchos besos y mucha fuerza Gracias por vuestra historia y mostrar al mundo que no estamos solos
familyvil 2 years ago
hit there how is balin my daughter is doing ok she is 2 in november and due back to cleft surgeon to discuss jaw surgery take care to all your family xx
kallumalice 2 years ago
Such a Beautiful and Blessed Boy! I agree, Balin is very fortunate to have such a wonder family and great support! I also think that the family is very fortunate as well to have an Angel brought into their lives! Love you Balin
Angel Eyez @ 5:45!!
God Bless Sweetie Pie <333
Bellaella86 2 years ago
I'm studying PRS and similar conditions for a Speech-Language Pathology exam and I stumbled upon this looking for helpful media.
Balin is very fortunate to have such supportive parents.
:]
rjkun16 2 years ago
Your story reminds me of ours so much! My son (6mos) was born with PRS. He too has opstructive apnea, reflux, micrognathia, ect! Seeing your story was like looking at my life through someone elses eyes. My son underwent the distraction at 8 weeks as we could no longer wait for his airway to improve. Your right..he came out looking totally different,! Because of his age he was in a medically induced coma and intubated while they rotated his jaw forward. Please feel free to email me anytime!
leah06303rc 2 years ago
My name is Dolors, I'm from Spain, and my son was born with PRS and palatine fisure. Now my son have 11 years old and if you like can speak with me and ask all you like. Sorry for my bad english. You can dream with beautifull futur with tour son. It's posible!!!!
familyvil 2 years ago
Truly inspriring. My Neice is 2.5 weeks old today. They say she may have PRS she was born with a small lower jaw, small tongue, and a cleft palate. She is having difficulty breathing that she is undergoing surgery today to open her airway. your video gives me hope. Thank you! This is scary even as an aunty.
Jennipop8 2 years ago
Thank you so much for your response! How is your niece doing?
Mick
PierreRobinAustralia 2 years ago
She is doing GREAT!! She is 2 months now and was release from the hospital last week. My neices conditions has brought a broken family back together. We all had to learn how to care for her and learn how to place an NG Tube. She will be on a NG Tube until she can eat like others her age. But she is doing well. Thanks :>)
Jennipop8 2 years ago
My son too has PRS. Blessings to your family. The journey is long and sonetimes hard....but our children are worth it. My sons story is at the end of his video..it links to a site. Hugs to Balin
Baltimore21224 2 years ago
Thanks for the hugs! Balin had is jaw distraction procedure yesterday. He is doing very well.
How is your son?
Mick
PierreRobinAustralia 2 years ago
My daughter showed me the video of your son. I wanted to cry from the beginning to the end, your son is truly an angel from god. I always believe that God never gives us more than we can bear. your son and your family will always be in my prayers.
tnequa 2 years ago
Thank you so much for your prayers! Balin had a jaw distraction procedure yesterday. It went very well. Ill add a new video in the next month or so to show that changes his operation has made to the quality of his life. Please thank your daughter for taking the time to watch Balin's video.
Hope you are all well.
Mick
PierreRobinAustralia 2 years ago
just wanna say goodnight and god bless.we all know he will fix oh yes he will fix it.he probably already did because he is an on time god yes he is.
tnequa 2 years ago
Thank you for support, friendship and advice. Balin had a big operation yesterday that will keep him in hospital for a couple of weeks.
Ill came a new video when he comes home so you can see ho he is doing.
Take care.
Mick
PierreRobinAustralia 2 years ago
cutest boy absolutely.the best kids are those with differences.not differences in looks but differences in heart.the one thing they all do is fight fight fight.don't allow people to think he is any different because it is 100 percent wrong.i think you had an angle i think anybody that have a unique factor is an angle sent from god.he smiles like everyday life is just a normal day.he is absolutely 100 percent true. and you probably don't know me but it doesn't mater.
tnequa 2 years ago
when he smiled i literally cried to see him so happy .i know you are thinking it is hard but god already turned your life around the day he was born.he also made sure your got the most gorgious boy in the whole wide world.i send kisses and hugs to balin through god so catch them and to balin hopefully everyone will see the strongest boy in the world like i did.
tnequa 2 years ago
I wish Balin and his family all the love, luck and laughter there is in the world. I hope the video will raise the awareness it deserves.
Good luck and enjoy the joys!
anoukbalins 2 years ago
Balin is doing well. He had a jaw distraction surgery yesterday. He'll be in hospital for the next couple of weeks. Thank you for your wishes and taking the time to write.
Hope you and your family are well.
Mick
PierreRobinAustralia 2 years ago
Hey Mick, Jacinta and Balin.
It's Natalie from Snuggles. I wish Balin all the best recovery and to come back to us real soon. Hope all is well with You and Jacinta. My deepest thoughts are with all of you. Take Care
Hugs and Kisses for that little fighter.
xox
LucyBrincat 2 years ago
I had no idea that this rare condition existed until I saw your video. How is your son doing nowadays?
BSBFan82 2 years ago
Balin...
As one of you carers at Snuggles, your friend & watching this inspiring video of what you, have had to go through in such a short time of your life, i hope in many years to come, you continue with your strength and courage to get you through anything, that life brings at you.!
All my prayers and best wishes go out to you Balin and your wonderfull family of love and support.
See you soon Buddy. xx :)
LucyBrincat 3 years ago
Comment removed
LucyBrincat 3 years ago
I have PRS. Surgeries when I was a child left me with the ability to grow up with all the other kids. Keep the hope.
e456c 3 years ago
my daughter alice may was born with pierre robin syndrome and cleft palate she has been in intensive care twice and thought we would god would take her many times but she is 14 months and on solid foods at last no dreaded ng tube changing thankyou for your lovely video it really gave me strenghth love to you all balin you are a angel xxx.
kallumalice 3 years ago
My son has a lot of these issues also. I have a video on one true media like this. These boys are so strong! He is adorable and I am sure you guys will overcome whatever obstacles lie ahead. Best of luck! -Leslie
iAddict062883 3 years ago
I posted a video of my son to see if you want. This is my brother's page though. My login and page is under cooperjune07.
Cooperjune07 3 years ago
The last photo says it all - what a beautiful family you are! I have had the opportunity to meet Balin through a mutual friend (megan) and I must say what a delightful little boy he is. Always smiling. Good luck for Balin's surgery
beclesouef 3 years ago
Mick, there are few people in my life who inspire me and move me to tears. Balin, Cindy and yourself have done both. Balin is the luckiest boy in the world to have parents like you and Cindy and I can only hope that if I ever become a parent, I would be half the person that you are. You have always been in my thoughts and heart and I wish the three of you all the best for the upcoming surgery. xoxo
shelllumo 3 years ago
What strenght you all have. Amazing. I can only guess at the emotional & physical challenges you've all experienced. You have a lovely little boy' - full of smiles, love & laughter by the looks of it : ) Best of luck with the surgeries.
andrea1873 3 years ago
This is an amazing story that reflects both you & Balin's strength of Love & Spirit! May Divine Mother bless & watch over you all. May she also bless your health workers etc with Divine inspiration!
Joieco 3 years ago
Wow, what an amazing little boy! My daughter Alex and Balin had swimming lessons together last year, I would never have known! He always had a grin from ear to ear! Best of luck with upcoming surgery!!
alexANDbyron 3 years ago
That was great Mick. I have seen the strength all of you have shown through all the challenges that you have encountered. You are both the most amazing parents, and Balin is just a born fighter. But the most amazing thing... he never complains, you never complain. It's just what has to be done. I can't imagine the hurt and pain of seeing him go through all this... but I do see the joy he brings you. His smile is infectious and I love watching the boys play and laugh together. Good luck.
meganwhitecmc 3 years ago
My 8 month old daughter has PRS and has already had the jaw distraction surgery. Our battle has seemed very similar to yours. Well done in raising awareness and best of luck for Balins surgery.
dadmummatilda 3 years ago
Words fail me but I wish all of you well.
Macmadgram 3 years ago
Thanks for watching my video. Please post a comment.
PierreRobinAustralia 3 years ago