THank you for uploading this. my son is having this done the 19th and i had no idea what he would look like after the surgery. You have helped my nerves 100%
I would like to compliment you on this video and the fact that you are doing this. I have Chiari Malformation also and have been told that I need the surgery too. I can remember blacking completely out as a child, I had a tingling sensation and then slowly I would come back. That all has stopped now, God is the healer of our bodies. May the Lord be with all who have this. Bless little Alex Lord for being so brave. AMEN.
I never heard of this disease before now. Please know that this video has struck a chord in my heart and I shall pray for a cure along with all my other prayers for other diseases as well. May God bless you and your precious son. ♥
my daughter has CM..and 3 children..she needs the surgery but she is currently unemployed and has no health care..i worry about her constantly. She relies alot on muscle relaxers and mild pain killers. She is over whelmed by medical bills from her frequent trips to the hospital and dr. visits and the cost of her meds. I am glad to see so much is being learned and studied about this.. thank you for your video. ;)
@mitch19636 It is a disease, and this is not misinformation. The word disease, does not mean contagious.. Many diseases, like diabetes and hypothyroidism, and hundreds of others are not contagious. Although I am sure when many people read the word "disease", they think "catchy"..but this is not misinformation. Thank you for your comment though :)
@lolliepop283 Thanks for the reply. You are cofrect that the word disease does NOT mean contagious. LUPUS is refered to as a disease BUT if course you can't catch it. :-) As for Arnolld chiari I was told by a professor that it is a Mal-formation.
I am glad that your son is alive and well, I know its been a few years since this video was posted, but my hopes and prayers go out to you and all who suffer from disease, wether they live on to lead a life of happiness or pass on to the great dark, i hope they and the families of the diseased are blessed by god and will never be forgotten.
my son is 5 and has had 12 surgerys realted to chiari/syringomyelia.Mikeys chiari journey,mikeys chiari journey2010, mikeys chiari journey video clips
Thankyou for posting this video, I too have Chiari Malformation and hope to learn more and spread knowledge about this disease. God Bless your family.
PLEASE DONT READ THIS. YOU WILL GET KISSED ON THE NEAREST POSSIBLE FRIDAY BY THE LOVE OF YOUR LIFE. TOMORROW WILL BE THE BEST DAY OF YOUR LIFE. HOWEVER IF YOU DONT POST THIS COMMENT something bad will happen. NOW UV STARTED READIN DIS DUNT STOP THIS IS SO SCARY. SEND THIS TO 5 VIDEOS IN 143 MINUTES WHEN UR DONE PRESS F6 AND UR CRUSHES NAME WILL APPEAR ON THE SCREEN IN BIG LETTERS. THIS IS SO SCARY CAUSE IT ACTUALLY WORKS THIS ACTUALLY WORKS
i hope your son doesnt die in a horrible life,i want him to live forever for you want me to make funny faces on here and try to make your son happy(O_o|o_O|:O|:P|>:(|>:O|:{}|:[]|:D|D:|:)hope he lives on forever god bless everyone and especially the ones who need help god bless god bless your son :(
Hey Alex... what's up bro? You set your telescope up yet? I miss you guys, can't wait to have you out here over the summer. Give me a call sometime bud.
My grandson has had the operation here in Australia and today he is a very healthy active boy. yes the operation was big and he was very sad (not in pain) after the operation but boy was it worth it. He can't play contact sport but he is a fun loving little boy with a big future in frount of him
Hi, Alex, it's Michael! Haven't heard from you in so long; how have you been? Hope you're fine! Say hello to everyone for me, okay?
Gee, it's been a year now since I first watched your video, isn't that awesome?
Oh, speaking of which: Your Mum should update the video's info box text, so the people don't think you're still 8years old - that's LONG ago, right? And maybe, she can even try to make a new upload of the vid, with the song HE'S MY SON on it; YouTube & Warner are on good terms again.
But you should definitely also leave the original here online, because there are so many wonderful comments on it - plus the video response from Troye Sivan :-)))
I will share your video again within the next day, towards the upcoming weekend, I think.
All the best to you, your Mum and to your brothers and sisters, Alex :-)!
Hola! Just a quick question -- What's the name of the current song playing on your video?...Its my kind of music! God Bless and hope all the best for you and your family...and since I'm writing this in December -- MERRY CHRISTMAS and Happy Holidays! :D
This tune comes from the YouTube AudioSwap collection of license free music.
It's a replacement for the song that was originally the soundtrack to this video: HE'S MY SON by Mark Schultz. Due to a copyright claim by Warner Music Group, the song had to be taken off the video. Mark Schultz' management, though, had no objection against the use of HE'S MY SON, as they saw the good cause Mark's song served. But sadly, Warner had the say in that, not the writer and performer of the song.
Do you know the name of the Song or the Artist? I really like this type of music and would like to get it. Thanks in advance for any help you can give! Happy Holidays! :D
Wow, good question. I know that a friend of mine had found the song in YouTube's AudioSwap section and recommended it to Rhonda, but it the moment, I don't remember the title. I'll check that out and let you know what I found out.
Hope you had a great start to the New Year!! Wishing you and your love ones a Blessed and Joyous 2010. Thanks for finding the Song/Artist for me -- I've quickly downloaded it onto my MP3 for continuous enjoyment! :D
A Happy New Year to you. too! Glad I could help. I hope you also find music you like via the lonk I messaged to you, to Kevin McLeod's site (Incompetech).
Hola Michael -- Thanks for the heads up on the Incompetech Site!! I've been listening to music all day and that's only 1 percents!! haha...hopefully, I'll be finished by 2011.
Thanks for posting this Video - it's quiet inspirational and perfect timing for me. Luv the instrucmental music - Who is it? I too have Chiari 1 Malformation and get Severe Pressure Migraine Headaches - my battle is just beginning, but I'm a fighter! Doc said NO surgery, but with treatments I can manage the pain. Its a condition for life with no cure; however..I look forward for a day with NO PAIN!! God Bless you and your family! :D
Today the doctor told me that I was border line Chiari type 1.I didnt know what to think.I looked on the internet what it meant and found that i had some of the symptoms,i'm kinda scared cansome one help me learn more about what I have.
What kind of symptoms are you having? I also have borderline Chiari and wonder if there are more people like me out there. I feel very alone in my fight with head pain.
God bless you and your son. I am sick too I have SM and I am right now writing so late crying because I 3 kids and I don't want to go to soon. I have hopes but when symptoms come I can't stop my worries. Good bye.
My son was diagnosed with a Chiari at the age of 5. I have watched your video many times because there is a smile that they both have, the eye shut half crack smile. I would like to ask you something. You had a song on here that was appropriate and it is no longer here. Would be willing to share that song with me. I loved the song. Excuse me if I am thinking of a different video. I just remember this video because of the familiar smile. Please update me on the success of the surgery as well.
I've just read what you've written for this video and your son. I'm watching now extreme makeover. It's a family that has this malformation but the mother is helping people who have this desease.. She and you really made me cry.
All i have to say is that you people are blessed from God! There are times that I don't respect life but reading what you wrote gives me power to go on.
Saw the update. Soooo happy for you. What a great kid, smiling through it all. You must be wonderful people, and for once, wonderful people got what they deserved - improvement. Many wishes for continued progress and health. Thanks for helping me learn, and feel about this illness.
A friend of mine just lost her little girl to Arnold-Chiari Type 3. She was only five months old. I'm trying to get as much information as I can about it. I wish you and your family my very best.
I had a decompression for a chiari malformation in 2006 now wow i didnt realise it was that long agao haha..... can i ask, anyone who has had a chiari and or a neuro decompression have you had any side affects of either......... i dont no if it is to do with the decompression but about 1 month after mind i woke up one day and had facial paralysis. now my presontation is very odd the paralysis is not there all the time but no1 knows why can anyone help!!!!!!! im desperate now!
No, no, Alex is fine so far! He has had decompression surgery (that is the only possible treatment for Arnold-Chiari Malformation) back in 2007, and since then he is almost free of symptoms.
Please also do check out the info box of the video for further information, plus the attached videos of SzChristie and myself. And don't miss out on SasasFavourites video response, plus TroyeSivan's wonderful song UNSUNG HERO, either :-)!
@nad64: Luckily, the situation for Alex has really improved a lot since he had the surgery; check out the info box, Rhonda made a "happy update" there :-)!
That was really touching. Your boy seems very charming and he's a very handsome young man. I wish the best for him and I know god will make the outcome great
im praying for ur son, and i hope that he may be a healthy young man and that God blesses ur family and keeps you strong. love the video. stay strong, and may God bless you
oh no problem! i am actually 1 now and the only drawback i have is i think a little bit slower than usual and im small....but thats nothing compared to your son.....I am blessed...and whenever I get discouraged now i can think of him and he makes me realize that it could be worse...i know that sounds a little weird.but people like him are heros! =)
Hi, Ellen! Do you remember our little chat about info boxes? Weeell ... :-) ...
Alex' Mum Rhonda write an update over there in the top right corner ...
"Update: Thank you all so much to all of you who have written to us.. Since the surgery, Alex still has some symptoms he deals with but not on such an extreme basis, and he is a happy, healthy young man. Who loves baseball lol..."
Yup, I do remember that chat! I wasn't sure if that little bit of info was accurate or not though, so I thought I'd just send my blessings along anyway!
Wow ... what a touching video - I am very glad to hear Alex is doing well now. Thank you for posting and touching so many peoples hearts by opening our your hearts and telling this story. Keep well Alex. Bronwyn (Sams mum) xxxx
Aw Thank you very much!!! Your son is soo talented, what a cutie!! I'm off to check out all his videos.. I'll be sharing his videos with everyone .. Thank you so much, Alex's mom ;)
I'm soo glad to hear from ya :) I'm working on an update, as soon as I can get my audio working, its' a bit frustrating. Thank you so much for your blessings:)
that is a beutiful boy. and there is hope =) my name is Kathryn, and I was born at one pound six ounces.... Im not suposed to be living atall.....I would do anything to be in his shoes, to take the pain away....but in life there are miracles....many people say i am a miracle....so there really is hope. I will keep him in my prayars everyday, and remember there are miracles.
Aww that is amazing story, I'm glad that you were a miracle!! They do happen people just need to have hope i agree.. Thank you so much for keeping him in your prayers, as you are in ours :)
I read your message, I am so sorry to hear about his condition. I really hate seeing kids suffer from those kinds of illness, but becoming a nurse soon I know that I will see lots of kids that suffers too much pain I am hoping for the best of your son Alex I hope and pray too that he is going to be a great kid and a healthy one with god's blessings.
Greetings from Sunshine State, Orlando, FLorida U.S.A.
just to let you know i emailed Mark Shultz manager to see if he could get marks permission for you to use the song that means alot to your son with this video.
its a simple thing to do, so i HOPE you will get a message from Mark saying you can use his song
in the info box of this video, Alex' Mum Rhonda wrote:
"Since the surgery, Alex still has some symptoms he deals with but not on such an extreme basis, and he is a happy, healthy young man. Who loves baseball lol... "
if you need cheering up while youre recovering, check out a couple of our comedy sketches on my youtube page ..just click on my name in blue above (stormbreakervideo)
Thank you soo much for your comment. I'm doing well thank you!!! lol your sister... I thought it looked like my sister too.. Who is letting all of them out? :) jk ..
There are things that go beyond our understanding. Things we do not understand. Like snow storms, floods and sick children. Yet there is a reason for everything. We are left only with a Trust in a Higher Power, and a knowledge that this Power knows what They are doing. Peaca and Good to you and Alex.
Im not sure what the disease is. It is always horrible when a child has some kind of illness. I hope all turns out well and Alex lives many happy pain free years.
This is a great tribute to such a fine and upstanding young man. I know that in the near future, all his hopes and dreams will be realized... and that we'll all be able to share in his adventures.
i just saw this video for the first time, i've never heard of chiari before, but after this video i know it is all but fun. and still you son has a smile on his face, that made me cry a little.
it is christmas evening now, and tonight i will pray for your son.
keep up the positive spirit and i hope that your son will be fine.
I just wanted to let you know that u r so unbelievably brave, and such a big role model to me. And because of this, i will do everything in my power to show everyone just how awesome and tough you are.
Your son doesnt' look sad, he smiles a lot. He's a powerfull person...I cried when I saw the video - it's so sad. But it shows that health is the primary point in life and that all the healthy people who live in this world could be glad not to have such an illness.
Thank you for making this video... It serves as a beautiful gift to your son, and a wonderful way of making people fully aware of this disease. Thank you!
When confronted with a fact like this about Alex, I always think a child should be happy from the start, no suffering, enjoying, discovering, playing. I so hope the surgery helped Alex!
For you as parents: the song said it all!
A lot of respect, for keeping courage and staying strong for the most beautiful treasure in life: a child! Like Alex!
Thank you for sharing this so personal video, my friend!
Thank you so much for your kind words!! I agree emotionally and physically it really takes a toll on the whole family. Sometime this week I am going to write your inbox in youtube as I have a question for you that you maybe able to help me with concerning the link between family members and Chiari.
I hope Abigail is doing well, She's been in my prayers. Please keep in touch and let me know how she is doing. I know it's only been a week and a half but I hope all is looking up!!
very well done and thank you for creating more awareness for chiari..i have had the decompression surgery myself and wish for a cure, hope your son continues to recover and do well always !
I am praying for you all. Im 2 months post op. After 6 years of mis-diagnosis!God Bless the little souls that have to endure this sort of pain. He is such a handsome little man and to see him smile when I KNOW he was hurting! " A merry heart doeth good like medicine" Proverbs
Tell him he made me look wimpy! And im an old lady! :(
i can relate...its a long road to battle with Arnold Chiari! I was diagnosed at 11 and now i'm 18 and still struggling, but i'm avoiding surgery. My mother had a malpractice surgery and since then had another surgery to correct it and i'm avoiding surgery until after college or later on in life simply because i dont want to be disabled as she is now. I hope things get better for you and your son! i like what you said "KNOWLEDGE IS POWER"
As Simples said, Chiari is not fatal. Chairi has multiple symtoms, some can live completly fine with it, and others have many severe symptoms. My best wishes to you and your cousin.
I have arnold chiari II malformation (ACM) and syringomyelia as a result, which means as well as the usual symptoms, I have syrinx(cysts) all the way down my spine, which have suficated my nerves and has made me numb over 90% of my body, I was 12 when I was diagnosed and 14 when i went in for decompression surgery. I am now 23 with no improvement on my situation. ACM isn't fatal, it's not as bad as some people make out, it's easily treatable with 1 surgery, and most cases the symptons stop.
Thank you so much for commenting! I'm very sorry to hear all the problems you have had with this, it's a very hard road to go down sometimes. Some with good endings and somewith out. Finding the right doctors is a bout in itself, and everyone is so different, my son is also still having problems after surgery, nothing major yet, but still headaches though now less frequent, some leg pain, and numbness. Do you still have the numbness or has it went away some?
I still have numbness and unfortunately mine will carry on progressing as they could not remove the syrinx. But I have a spoken to quite a few people who have fully recovered their feeling, and their head aches become less frequent and some have completely stopped. And even with my persistent symptoms I still enjoy a perfectly normal life. I wish your son all the luck and hope he returns to perfect health.
I myself had a decompression surgery for Chiari Malformation I in June 2007 done by Dr.Florian Roser, Stuttgart Hospital Germany. I'm 45years old and its took me 12 years to decided for the surgery. Not many people can understand us. you must be are very brave..I pray for your health recovery.
i love you, i love you!!! you are a beautiful person for making an effort to raised awareness of this condition. I am 20, and, concider myself somewhat of a "verean" of sorts, i have been to doctors all my life, but it was in 1999, after an MRI test that i was formally diagnosed with ACM type 2. i have had 4 surgeries that have spanned throughout some of those years, my most recent, and hopefully last, in 2006.
yes, the headaches are still around, but for me, it depends on the weather changes, I do not do well in winter, that's the most cold and moist time, which the pressure increases. it's an up and down battle really, some months i am progressing in walking, some months i am in too much pain to do anything. because people do not understand chiari, they are quick to accuse me of "making lame excuses" for when i really do hurt. this is why raising awareness to this condition is so important. PM me!
The song is beautiful. It expresses what every parent feels when their child is hurting. I have Chiari, Sryingomyelia, Fibromyalgia and more. I pray that this will not genetically be passed on...that it ends with me. I hope your son's health improves.
No need to feel embarassed:) Nope, he had surgery, it was a long road. He was doing fine for the longest time, but is now starting to have headaches all over again. Thank you soo much for commenting :)
Thank you for sharing this beautiful film. Our 3.5 year old son was diagnosed with Chiari at age 2. His one year check up showed no further extension of the cerebellar tonsils. He is asymptomatic currently. We too are hoping and praying for the best for our son. Thank you for sharing this film!
THank you for uploading this. my son is having this done the 19th and i had no idea what he would look like after the surgery. You have helped my nerves 100%
76msjackie 2 months ago
My name is Heather I have a support group on FB called Zipperheads for Chiari, we support you and love you.
1thesauers 3 months ago
I would like to compliment you on this video and the fact that you are doing this. I have Chiari Malformation also and have been told that I need the surgery too. I can remember blacking completely out as a child, I had a tingling sensation and then slowly I would come back. That all has stopped now, God is the healer of our bodies. May the Lord be with all who have this. Bless little Alex Lord for being so brave. AMEN.
Iggy2721 7 months ago
@Iggy2721 amen! and I shall pray for all who are here :)
Hevinlee 3 months ago
I never heard of this disease before now. Please know that this video has struck a chord in my heart and I shall pray for a cure along with all my other prayers for other diseases as well. May God bless you and your precious son. ♥
Hevinlee 3 months ago
hi-
my daughter has CM..and 3 children..she needs the surgery but she is currently unemployed and has no health care..i worry about her constantly. She relies alot on muscle relaxers and mild pain killers. She is over whelmed by medical bills from her frequent trips to the hospital and dr. visits and the cost of her meds. I am glad to see so much is being learned and studied about this.. thank you for your video. ;)
littletoadtwo 9 months ago
may God bless everyone single person...... thank you Lord
xalaoxi 1 year ago
It is not a Disease I get tired of miss-information about ACM et al. You cannot catch it,
It is a strucual mal-formatio of the occiput and the surrounding structures
mitch19636 1 year ago
@mitch19636 It is a disease, and this is not misinformation. The word disease, does not mean contagious.. Many diseases, like diabetes and hypothyroidism, and hundreds of others are not contagious. Although I am sure when many people read the word "disease", they think "catchy"..but this is not misinformation. Thank you for your comment though :)
lolliepop283 1 year ago
@lolliepop283 Thanks for the reply. You are cofrect that the word disease does NOT mean contagious. LUPUS is refered to as a disease BUT if course you can't catch it. :-) As for Arnolld chiari I was told by a professor that it is a Mal-formation.
Have a good day :)
mitch19636 1 year ago
I am glad that your son is alive and well, I know its been a few years since this video was posted, but my hopes and prayers go out to you and all who suffer from disease, wether they live on to lead a life of happiness or pass on to the great dark, i hope they and the families of the diseased are blessed by god and will never be forgotten.
skyterror999 1 year ago
my son is 5 and has had 12 surgerys realted to chiari/syringomyelia.Mikeys chiari journey,mikeys chiari journey2010, mikeys chiari journey video clips
hollimagolli123 1 year ago
Glad Alex is Improving :)
May God shower all his blessings on him
Best Wishes ~ ZAc
KissThePoems 1 year ago
Thankyou for posting this video, I too have Chiari Malformation and hope to learn more and spread knowledge about this disease. God Bless your family.
TheMargoShow 1 year ago
This has been flagged as spam show
PLEASE DONT READ THIS. YOU WILL GET KISSED ON THE NEAREST POSSIBLE FRIDAY BY THE LOVE OF YOUR LIFE. TOMORROW WILL BE THE BEST DAY OF YOUR LIFE. HOWEVER IF YOU DONT POST THIS COMMENT something bad will happen. NOW UV STARTED READIN DIS DUNT STOP THIS IS SO SCARY. SEND THIS TO 5 VIDEOS IN 143 MINUTES WHEN UR DONE PRESS F6 AND UR CRUSHES NAME WILL APPEAR ON THE SCREEN IN BIG LETTERS. THIS IS SO SCARY CAUSE IT ACTUALLY WORKS THIS ACTUALLY WORKS
lolliepop283 1 year ago
i hope your son doesnt die in a horrible life,i want him to live forever for you want me to make funny faces on here and try to make your son happy(O_o|o_O|:O|:P|>:(|>:O|:{}|:[]|:D|D:|:)hope he lives on forever god bless everyone and especially the ones who need help god bless god bless your son :(
70MrKitty 1 year ago
nice slow techno music.(i hope he survived)oh wait,he did survive!O_o|o_O?:|?:P>:|to many faces!
70MrKitty 1 year ago
This has been flagged as spam show
How is you son today?
Even sick he is happy
I cannot stand when I see sick people smiling
I cry of heppiness.
God bless you and your son.
I'm going to pray for you and him
Stay with God.
guilhermeaosilva 1 year ago
How is you son today?
Even sick he is happy
I cannot stand when I see sick people smiling
I cry of heppiness.
God bless you and your son.
I'm going to pray for you and him
Stay with God.
guilhermeaosilva 1 year ago
Hey Alex... what's up bro? You set your telescope up yet? I miss you guys, can't wait to have you out here over the summer. Give me a call sometime bud.
lostiniraq1118 2 years ago
Comment removed
noneyourdamnbusiness 2 years ago
Please don't be scared to death.
My grandson has had the operation here in Australia and today he is a very healthy active boy. yes the operation was big and he was very sad (not in pain) after the operation but boy was it worth it. He can't play contact sport but he is a fun loving little boy with a big future in frount of him
FA7273 2 years ago
Hi guys, hi Alex. Just wanted to say wasssuuppp!!! What the FSH Alex?!?!?! Haha love you guys, love ya Alex. Say hi to everyone for me.
lostiniraq1118 2 years ago
spread the word abot this video do me a favor
lolliepop283 2 years ago
Hi, Alex, it's Michael! Haven't heard from you in so long; how have you been? Hope you're fine! Say hello to everyone for me, okay?
Gee, it's been a year now since I first watched your video, isn't that awesome?
Oh, speaking of which: Your Mum should update the video's info box text, so the people don't think you're still 8years old - that's LONG ago, right? And maybe, she can even try to make a new upload of the vid, with the song HE'S MY SON on it; YouTube & Warner are on good terms again.
Truedantalion 2 years ago
But you should definitely also leave the original here online, because there are so many wonderful comments on it - plus the video response from Troye Sivan :-)))
I will share your video again within the next day, towards the upcoming weekend, I think.
All the best to you, your Mum and to your brothers and sisters, Alex :-)!
~Michael
Truedantalion 2 years ago
Hola! Just a quick question -- What's the name of the current song playing on your video?...Its my kind of music! God Bless and hope all the best for you and your family...and since I'm writing this in December -- MERRY CHRISTMAS and Happy Holidays! :D
Goldtube2 2 years ago
@Goldtube2
This tune comes from the YouTube AudioSwap collection of license free music.
It's a replacement for the song that was originally the soundtrack to this video: HE'S MY SON by Mark Schultz. Due to a copyright claim by Warner Music Group, the song had to be taken off the video. Mark Schultz' management, though, had no objection against the use of HE'S MY SON, as they saw the good cause Mark's song served. But sadly, Warner had the say in that, not the writer and performer of the song.
Truedantalion 2 years ago
@Truedantalion
Do you know the name of the Song or the Artist? I really like this type of music and would like to get it. Thanks in advance for any help you can give! Happy Holidays! :D
Goldtube2 2 years ago
@Goldtube2
Wow, good question. I know that a friend of mine had found the song in YouTube's AudioSwap section and recommended it to Rhonda, but it the moment, I don't remember the title. I'll check that out and let you know what I found out.
Happy Holidays to you too :-)!
Truedantalion 2 years ago
Hope you had a great start to the New Year!! Wishing you and your love ones a Blessed and Joyous 2010. Thanks for finding the Song/Artist for me -- I've quickly downloaded it onto my MP3 for continuous enjoyment! :D
Goldtube2 2 years ago
@Goldtube2
A Happy New Year to you. too! Glad I could help. I hope you also find music you like via the lonk I messaged to you, to Kevin McLeod's site (Incompetech).
~Michael
Truedantalion 2 years ago
Hola Michael -- Thanks for the heads up on the Incompetech Site!! I've been listening to music all day and that's only 1 percents!! haha...hopefully, I'll be finished by 2011.
~Tito
Goldtube2 2 years ago
im 11 now
lolliepop283 2 years ago
my mom made this video im not 8 anymore
lolliepop283 2 years ago
Thanks for posting this Video - it's quiet inspirational and perfect timing for me. Luv the instrucmental music - Who is it? I too have Chiari 1 Malformation and get Severe Pressure Migraine Headaches - my battle is just beginning, but I'm a fighter! Doc said NO surgery, but with treatments I can manage the pain. Its a condition for life with no cure; however..I look forward for a day with NO PAIN!! God Bless you and your family! :D
Goldtube2 2 years ago
Today the doctor told me that I was border line Chiari type 1.I didnt know what to think.I looked on the internet what it meant and found that i had some of the symptoms,i'm kinda scared cansome one help me learn more about what I have.
TheLastVampireChild 2 years ago
What kind of symptoms are you having? I also have borderline Chiari and wonder if there are more people like me out there. I feel very alone in my fight with head pain.
Bekki
jessers5jordan 2 years ago
my 15m old daughter also has chiari
kpinz612 2 years ago
Aww Alex... so flippin cute with his lil stuffed monkey hahahaha. WHAT THE FSH ALEX!!! Hahaha love you guys, love ya Alex... Give me a call sometime.
lostiniraq1118 2 years ago
God bless you and your son; his strength forever will be an inspiration to me (:
-Claire
InosensuNoUtagoe 2 years ago
Alex is one of my Friend's I'm glad he's okay! :')
xXGuitarlover11Xx 2 years ago
Thanks hun!!!! I hope all is well.. and dont worry i'll join yoville like i promised ;) ... see you tommorrow... hugs!!
Lollipop12104 2 years ago
@xXGuitarlover11Xx hi
lolliepop283 2 years ago
alex is my best friends brother so i couldent help but feel sorry no matter what i said im glad he made it threw ok
the kiera i said hi!
wolf5637 2 years ago
God bless you and your son. I am sick too I have SM and I am right now writing so late crying because I 3 kids and I don't want to go to soon. I have hopes but when symptoms come I can't stop my worries. Good bye.
123braky 2 years ago
Oh please be looking for a letter from me in your inbox soon!! My prayers are with you!
Lollipop12104 2 years ago
i hope your son gets better:)
CoolKarateGirl 2 years ago
My son was diagnosed with a Chiari at the age of 5. I have watched your video many times because there is a smile that they both have, the eye shut half crack smile. I would like to ask you something. You had a song on here that was appropriate and it is no longer here. Would be willing to share that song with me. I loved the song. Excuse me if I am thinking of a different video. I just remember this video because of the familiar smile. Please update me on the success of the surgery as well.
juelsb1 2 years ago
God blesses your son
Devilrises205 2 years ago 2
At least he's better now right?
xXGuitarlover11Xx 2 years ago
@xXGuitarlover11Xx yes i am
lolliepop283 2 years ago
I've just read what you've written for this video and your son. I'm watching now extreme makeover. It's a family that has this malformation but the mother is helping people who have this desease.. She and you really made me cry.
All i have to say is that you people are blessed from God! There are times that I don't respect life but reading what you wrote gives me power to go on.
I just smile and laugh only seeing Alex smiling!
He is the real hero!!
louka5 2 years ago 5
Thank you soo much for your kind words and taking the time to write such a beautifull message.. God Bless!!! :) and Alex says hello :P
Lollipop12104 2 years ago
Saw the update. Soooo happy for you. What a great kid, smiling through it all. You must be wonderful people, and for once, wonderful people got what they deserved - improvement. Many wishes for continued progress and health. Thanks for helping me learn, and feel about this illness.
IFEELSOSMOOCHIE 2 years ago 4
God Bless!! your family
NikonT8 2 years ago 2
A friend of mine just lost her little girl to Arnold-Chiari Type 3. She was only five months old. I'm trying to get as much information as I can about it. I wish you and your family my very best.
biohazard2886 2 years ago 2
May angels be with you always. My family and I will say a special prayer tonight for you to keep you and your family strong.
clellard 2 years ago 8
@clellard nice comment god bless you and her son on the video
70MrKitty 1 year ago
Yay Alex!
lostiniraq1118 2 years ago 3
So sorry for his misfortune- I am praying for him along with I'm sure Millions of others.
rivema1231 2 years ago
We all love your son!
If love would have curing power, he would be cured by now...
48acar19 2 years ago 2
iam sorry what happen
4201242 2 years ago
i hope he will be ok
MorganPsOfficial 2 years ago
your son and your family will always be in my prayers... God Bless!
jonde420 2 years ago 3
I am very sorry about your son. My son myself has a rare disease too. Every day he makes it is like a miracle.
50lilygrace 2 years ago 2
Thank you very much for your kind words!!! It is very very challenging, i'd love to keep in contact with you, I will also be writting you a note :)
Lollipop12104 2 years ago
I had a decompression for a chiari malformation in 2006 now wow i didnt realise it was that long agao haha..... can i ask, anyone who has had a chiari and or a neuro decompression have you had any side affects of either......... i dont no if it is to do with the decompression but about 1 month after mind i woke up one day and had facial paralysis. now my presontation is very odd the paralysis is not there all the time but no1 knows why can anyone help!!!!!!! im desperate now!
x
eilrahc101 2 years ago
I will be happy to help you with anything I know:) I will be replying to your inbox shortly :)
Lollipop12104 2 years ago
aw i hope you get better :) u seem to be a very strong kid
Karategirl402 2 years ago 4
hey:))) brilliant kid. very brave. i hope you all make it. great smile. makes us look quite ordinary. pls keep us posted. lol
wildangus999 3 years ago 3
is he dead? ;s
LumiKoira97 3 years ago
No, no, Alex is fine so far! He has had decompression surgery (that is the only possible treatment for Arnold-Chiari Malformation) back in 2007, and since then he is almost free of symptoms.
Please also do check out the info box of the video for further information, plus the attached videos of SzChristie and myself. And don't miss out on SasasFavourites video response, plus TroyeSivan's wonderful song UNSUNG HERO, either :-)!
Truedantalion 3 years ago
? ;o
LumiKoira97 3 years ago
nääe.... I feel sorry for your son, and the rest of you'r familly.
KiieChan 3 years ago
im 19 i have chiari 1 malformation but i can't have surgery yet
hannahgrer19 3 years ago
shit that really sucks :-(
doody17 3 years ago
I wonder how things turned out.
nad64 3 years ago
@nad64: Luckily, the situation for Alex has really improved a lot since he had the surgery; check out the info box, Rhonda made a "happy update" there :-)!
Truedantalion 3 years ago
whats chiari
Darkwolve123 3 years ago
im 17 and have ciarai 1 malformation im currently waiting for decompression surgery
lulu1201306 3 years ago
That was really touching. Your boy seems very charming and he's a very handsome young man. I wish the best for him and I know god will make the outcome great
jkyep13 3 years ago
im praying for ur son, and i hope that he may be a healthy young man and that God blesses ur family and keeps you strong. love the video. stay strong, and may God bless you
lovelyduklin 3 years ago 3
may Allah protect your son and brings him home save
:)
venosic 3 years ago 3
(((-: 10,000 views!! :-)))
Truedantalion 3 years ago
oh no problem! i am actually 1 now and the only drawback i have is i think a little bit slower than usual and im small....but thats nothing compared to your son.....I am blessed...and whenever I get discouraged now i can think of him and he makes me realize that it could be worse...i know that sounds a little weird.but people like him are heros! =)
is he going to be ok??
JoBrosLover14 3 years ago
Glad to see the video back up! I hope your son is doing well! ~Libera36
Libera36 3 years ago 2
Hi, Ellen! Do you remember our little chat about info boxes? Weeell ... :-) ...
Alex' Mum Rhonda write an update over there in the top right corner ...
"Update: Thank you all so much to all of you who have written to us.. Since the surgery, Alex still has some symptoms he deals with but not on such an extreme basis, and he is a happy, healthy young man. Who loves baseball lol..."
Truedantalion 3 years ago
Yup, I do remember that chat! I wasn't sure if that little bit of info was accurate or not though, so I thought I'd just send my blessings along anyway!
Libera36 3 years ago 2
(((-: An extra helping of blessings is always welcome, that's for sure :-)))
Truedantalion 3 years ago
Wow ... what a touching video - I am very glad to hear Alex is doing well now. Thank you for posting and touching so many peoples hearts by opening our your hearts and telling this story. Keep well Alex. Bronwyn (Sams mum) xxxx
bverlin 3 years ago 3
Aw Thank you very much!!! Your son is soo talented, what a cutie!! I'm off to check out all his videos.. I'll be sharing his videos with everyone .. Thank you so much, Alex's mom ;)
Lollipop12104 3 years ago
I'm soo glad to hear from ya :) I'm working on an update, as soon as I can get my audio working, its' a bit frustrating. Thank you so much for your blessings:)
Lollipop12104 3 years ago
that is a beutiful boy. and there is hope =) my name is Kathryn, and I was born at one pound six ounces.... Im not suposed to be living atall.....I would do anything to be in his shoes, to take the pain away....but in life there are miracles....many people say i am a miracle....so there really is hope. I will keep him in my prayars everyday, and remember there are miracles.
god bless!
Kathryn
JoBrosLover14 3 years ago 2
Aww that is amazing story, I'm glad that you were a miracle!! They do happen people just need to have hope i agree.. Thank you so much for keeping him in your prayers, as you are in ours :)
Lollipop12104 3 years ago
Im so glad that his surgery went well and how he's such a brave boy.
I hope things keep on going well and I wish him all my love.
-Katherine
itzmizzkat 3 years ago 2
I read your message, I am so sorry to hear about his condition. I really hate seeing kids suffer from those kinds of illness, but becoming a nurse soon I know that I will see lots of kids that suffers too much pain I am hoping for the best of your son Alex I hope and pray too that he is going to be a great kid and a healthy one with god's blessings.
Greetings from Sunshine State, Orlando, FLorida U.S.A.
CHINO SKY:)
evolutionboi 3 years ago 2
you have a beautiful son, and I am sure there are a lot of people that will support him and you.
I wish you all the best.
WakatiUjao 3 years ago 2
At 1:00, 1:20 and 1:43, the pictures of him sleeping cuddled up with his monkey are so adorable. What a beautiful boy you have Lollipop.
Alex, stay strong buddy and don't let anything ever get you down. I truly and sincerely wish you all the best in life.
lostiniraq1118 3 years ago 2
Shalom. My prayers will be with you, him, and your family.
TheKosherKrew 3 years ago 2
poor kid
sock9000 3 years ago
just to let you know i emailed Mark Shultz manager to see if he could get marks permission for you to use the song that means alot to your son with this video.
its a simple thing to do, so i HOPE you will get a message from Mark saying you can use his song
fingers crossed
AJ
StormbreakerVideo 3 years ago
It's not as simple, unfortunately. I just sent you a message some minutes before ... Check it out.
Truedantalion 3 years ago
Katie,
in the info box of this video, Alex' Mum Rhonda wrote:
"Since the surgery, Alex still has some symptoms he deals with but not on such an extreme basis, and he is a happy, healthy young man. Who loves baseball lol... "
Hope I could cheer you up a bit with that.
Truedantalion 3 years ago
great music choice!
hope you feel better soon alex,
if you need cheering up while youre recovering, check out a couple of our comedy sketches on my youtube page ..just click on my name in blue above (stormbreakervideo)
its a kids comedy show :-)
keep fighting.
AJ
StormbreakerVideo 3 years ago
yes the music is great :D But I liked the song before much better
Kasapamese 3 years ago
the music before wouldnt play for me , now it does.. so i guess you used a different song before
AJ
uk
StormbreakerVideo 3 years ago
NOW the music is working :D
Kasapamese 3 years ago
Ah, cool: The Audio Swap finally worked out! Nice song; very atmospheric. Good choice ... for now :-)!
Truedantalion 3 years ago
Thank you soo much for your comment. I'm doing well thank you!!! lol your sister... I thought it looked like my sister too.. Who is letting all of them out? :) jk ..
Lollipop12104 3 years ago
Alex? You´re such a brave person
i admire you!
For me you are a hero, a very big hero!
All my respect goes to you, boy !!
Such times are difficult, but hold to the beautiful and good times!
I think memories are important for everyone!
My whole respect, man (:
You will create everything in the life!
Greetz from Germany ! ;)
And sorry for my englisch !! :D
xbebeqimx 3 years ago
the music is not working yet
SasasFavorites 3 years ago
it's up again yay
SasasFavorites 3 years ago
I'm so sorry guys, he's so brave. How is he doing now? What is the song called, I love it!
Crispin
cjk100 3 years ago
The song is called HE'S MY SON (by Mark Shultz).
Alex' surgery went well, and he's fine - plus he LOVES reading comments on his video, so please drop Alex a line here, people :-)!
And: Inform yourself about Chiari - check out the link in the info box. Knowledge is power!
Rhonda, I hope it's okay that I jumped into the breach here and answered that comment.
Best,
--Michael
Truedantalion 3 years ago
I am honestly sorry......I hope he's ok :)
Hion13 3 years ago 3
I really feel sorry, he is a very brave and nice boy! Wish him all the best!
guitarflamenco77 3 years ago 4
Oh btw, as a suggestion of Truedantalion, I will put my composition as a video response, hope you don't mind.
guitarflamenco77 3 years ago 4
There are things that go beyond our understanding. Things we do not understand. Like snow storms, floods and sick children. Yet there is a reason for everything. We are left only with a Trust in a Higher Power, and a knowledge that this Power knows what They are doing. Peaca and Good to you and Alex.
k6tpl 3 years ago 4
Im not sure what the disease is. It is always horrible when a child has some kind of illness. I hope all turns out well and Alex lives many happy pain free years.
expostfactum 3 years ago 2
This is a great tribute to such a fine and upstanding young man. I know that in the near future, all his hopes and dreams will be realized... and that we'll all be able to share in his adventures.
Merry Christmas and Happy New Year!
qiranger 3 years ago 3
Also found this video through the channel of Troye Sivan.
Thanks for making us aware of it.
I wish your son and your family all the best, and a very Merry Christmas!!!
PressF5forHelp 3 years ago 2
hello,
i just saw this video for the first time, i've never heard of chiari before, but after this video i know it is all but fun. and still you son has a smile on his face, that made me cry a little.
it is christmas evening now, and tonight i will pray for your son.
keep up the positive spirit and i hope that your son will be fine.
merry christmas,
arnold
Arnold1987 3 years ago 2
Amazing video. Your son will defenatly be in my prayers this holiday season. Happy holidays
feathers10123 3 years ago 2
No, indeed it wasn't long:
(((-: Congratulations on 7000 +1 views! :-)))
Truedantalion 3 years ago
Alex,
I just wanted to let you know that u r so unbelievably brave, and such a big role model to me. And because of this, i will do everything in my power to show everyone just how awesome and tough you are.
Troye
TroyeSivan18 3 years ago 13
Your a good kid Troye. Alex sure is lucky to have a friend like you. I guess your lucky to have a friend like Alex too.
expostfactum 3 years ago 3
As I love commemorating round numbers:
(((-: Congratulations on 6900 views! :-)))
CU again in 100+ ... won't be long, I guess :-)!
Truedantalion 3 years ago
Your son doesnt' look sad, he smiles a lot. He's a powerfull person...I cried when I saw the video - it's so sad. But it shows that health is the primary point in life and that all the healthy people who live in this world could be glad not to have such an illness.
I wish you and your family all the best!
schokokokokeks
schokokokokeks 3 years ago 2
Amazing video. Thank you for sharing it. I am sorry about your son.
davecoyle1 3 years ago
Thank you for making this video... It serves as a beautiful gift to your son, and a wonderful way of making people fully aware of this disease. Thank you!
Libera36 3 years ago
my frined has a disease like that, only it isn't as bad. and he only gets the symptoms in the fall. Strange isn't it?
Jcrexxor 3 years ago
What a loving video for your son, my friend.
When confronted with a fact like this about Alex, I always think a child should be happy from the start, no suffering, enjoying, discovering, playing. I so hope the surgery helped Alex!
For you as parents: the song said it all!
A lot of respect, for keeping courage and staying strong for the most beautiful treasure in life: a child! Like Alex!
Thank you for sharing this so personal video, my friend!
Roeleke
Twirretwarre 3 years ago
Rhonda,
this video is a wonderful gift you made to Alex, and to all of us. Thanks so much for posting.
Alex, I hope you're doing better now, and I hope you'll being doing fine in the future, day by day.
My heart goes out to you.
Truedantalion 3 years ago
had the same thing stay in there body it was hell
GingerVikingMan 3 years ago
Thank you so much for your kind words!! I agree emotionally and physically it really takes a toll on the whole family. Sometime this week I am going to write your inbox in youtube as I have a question for you that you maybe able to help me with concerning the link between family members and Chiari.
Thank you very much,
Rhonda and Alex
Lollipop12104 3 years ago
I hope Abigail is doing well, She's been in my prayers. Please keep in touch and let me know how she is doing. I know it's only been a week and a half but I hope all is looking up!!
Best Wishes, Rhonda and Alex
Lollipop12104 3 years ago
this is touching
hiney2002 3 years ago
Power of the love. You love your son, It's important for him and all your family.
theatom2000 3 years ago
i have it too and im 13
EntertainedEasily 3 years ago
My mother has Chiari, her arm is numb and has sore back, she had to have some of her brain taken out, She Will ALWAYS be my hero!
Sxcdoll125 3 years ago
This videois so touching. I have Arnold-Chiari Malformation, and I made a video about this. Check it, if you want! Your son is very cute. ;)
Blessings to you and your son!
SzChristie 3 years ago
this vid made me cry so much.
my little cousin who is 7 was diagnosed with chiari and he has to have surgery within the next 2 months.
x3mikki 3 years ago
very well done and thank you for creating more awareness for chiari..i have had the decompression surgery myself and wish for a cure, hope your son continues to recover and do well always !
dolphintears60 3 years ago
I am praying for you all. Im 2 months post op. After 6 years of mis-diagnosis!God Bless the little souls that have to endure this sort of pain. He is such a handsome little man and to see him smile when I KNOW he was hurting! " A merry heart doeth good like medicine" Proverbs
Tell him he made me look wimpy! And im an old lady! :(
Bless you all!
peoplerstranj 3 years ago
i can relate...its a long road to battle with Arnold Chiari! I was diagnosed at 11 and now i'm 18 and still struggling, but i'm avoiding surgery. My mother had a malpractice surgery and since then had another surgery to correct it and i'm avoiding surgery until after college or later on in life simply because i dont want to be disabled as she is now. I hope things get better for you and your son! i like what you said "KNOWLEDGE IS POWER"
plc24 3 years ago
As Simples said, Chiari is not fatal. Chairi has multiple symtoms, some can live completly fine with it, and others have many severe symptoms. My best wishes to you and your cousin.
Rhonda and Alex
Lollipop12104 4 years ago
I have arnold chiari II malformation (ACM) and syringomyelia as a result, which means as well as the usual symptoms, I have syrinx(cysts) all the way down my spine, which have suficated my nerves and has made me numb over 90% of my body, I was 12 when I was diagnosed and 14 when i went in for decompression surgery. I am now 23 with no improvement on my situation. ACM isn't fatal, it's not as bad as some people make out, it's easily treatable with 1 surgery, and most cases the symptons stop.
simples22 4 years ago
Thank you so much for commenting! I'm very sorry to hear all the problems you have had with this, it's a very hard road to go down sometimes. Some with good endings and somewith out. Finding the right doctors is a bout in itself, and everyone is so different, my son is also still having problems after surgery, nothing major yet, but still headaches though now less frequent, some leg pain, and numbness. Do you still have the numbness or has it went away some?
Lollipop12104 4 years ago
I still have numbness and unfortunately mine will carry on progressing as they could not remove the syrinx. But I have a spoken to quite a few people who have fully recovered their feeling, and their head aches become less frequent and some have completely stopped. And even with my persistent symptoms I still enjoy a perfectly normal life. I wish your son all the luck and hope he returns to perfect health.
simples22 4 years ago
new forum:
arnold - chiari . com
JaviExAmandi 4 years ago
I myself had a decompression surgery for Chiari Malformation I in June 2007 done by Dr.Florian Roser, Stuttgart Hospital Germany. I'm 45years old and its took me 12 years to decided for the surgery. Not many people can understand us. you must be are very brave..I pray for your health recovery.
Love from me.
Watie Rauch - Bangkok
puterirauch 4 years ago
i love you, i love you!!! you are a beautiful person for making an effort to raised awareness of this condition. I am 20, and, concider myself somewhat of a "verean" of sorts, i have been to doctors all my life, but it was in 1999, after an MRI test that i was formally diagnosed with ACM type 2. i have had 4 surgeries that have spanned throughout some of those years, my most recent, and hopefully last, in 2006.
tigercubgurlie 4 years ago 2
yes, the headaches are still around, but for me, it depends on the weather changes, I do not do well in winter, that's the most cold and moist time, which the pressure increases. it's an up and down battle really, some months i am progressing in walking, some months i am in too much pain to do anything. because people do not understand chiari, they are quick to accuse me of "making lame excuses" for when i really do hurt. this is why raising awareness to this condition is so important. PM me!
tigercubgurlie 4 years ago
The song is beautiful. It expresses what every parent feels when their child is hurting. I have Chiari, Sryingomyelia, Fibromyalgia and more. I pray that this will not genetically be passed on...that it ends with me. I hope your son's health improves.
tarzanDavidrocks 4 years ago
he's such an adorable kid! Good Luck!
acheese9 4 years ago
Thank you so much! Was very nice talking with you! Take care!!
Lollipop12104 4 years ago
That's really sad. How common is this? I'm sorry for aking, but is it always fatal? Sorry if the questions were rude
acheese9 4 years ago 2
did ur son die?? bc if it did den im sooooo srry 4 ur loss but if he didnt den i feel soooo embarrassed rite now
cutepuppies12 4 years ago
No need to feel embarassed:) Nope, he had surgery, it was a long road. He was doing fine for the longest time, but is now starting to have headaches all over again. Thank you soo much for commenting :)
Lollipop12104 4 years ago
np i lo0o0o0o0o0o0o0o0o0ve commenting
cutepuppies12 4 years ago
Thank you for sharing this beautiful film. Our 3.5 year old son was diagnosed with Chiari at age 2. His one year check up showed no further extension of the cerebellar tonsils. He is asymptomatic currently. We too are hoping and praying for the best for our son. Thank you for sharing this film!
reconnectllc 4 years ago
seems like a great kid : )
cheers and best wishes from The Knockarounds
KnockaroundsTV 4 years ago
This video is best viewed at smaller size.
Lollipop12104 4 years ago