How was she born with a disability? -- AMC Awareness Month~DAY 2

  Рет қаралды 5,302

Team AMC Ana

Team AMC Ana

Ай бұрын

Today we're going to talk about how Arthrogryposis can happen and what it's like during pregnancy, diagnosis, and birth. #bornwithadisability #childbirth #arthrogryposis #disability #awareness #AMCAwareness

Пікірлер: 146
@KQC9127
@KQC9127 Ай бұрын
Thank you Nana for always educating people about this “Different Ability” and helping expectant Moms to understand the more positive possibilities for their unborn child.
@madelynmandina7495
@madelynmandina7495 Ай бұрын
I am a grandmother of an AMC granddaughter(now 16 years old). They are very determined little people, especially when raised by parents , such as you, Nana, and Aaron. I am continuously learning more and more with each video you share. Thank you so much , The A3 team.
@aliciabellante6643
@aliciabellante6643 Ай бұрын
I was born with spina bifida in 1985. My parents didn’t know there was something wrong with me until I was born. The doctors told my parents I probably wouldn’t survive my first 5 years of life. They told them that I would never walk, talk or do anything and that I would be a vegetable for the rest of my life. But I’m 39 (almost half way to 40 years old). I’m walking and talking and driving a car and so much more. I live on my own with the occasional staying over my sister’s (weekends just to break up the week). It is possible for special needs kids to be anything they want to be!
@KSalmon74
@KSalmon74 Ай бұрын
Hi: I was born with Spina Bifida as well! Nice to meet you!
@aliciabellante6643
@aliciabellante6643 Ай бұрын
@@KSalmon74 nice to meet you too. Doctors don’t know enough! Hope you’re doing well!
@wandafoster6320
@wandafoster6320 Ай бұрын
I’ve heard Ana’s story many times since she was 4, but for some reason this video painted the best picture of her history and condition. Great job helping us all understand. It’s been great following you all these years! ❤️
@tirednsnarky9555
@tirednsnarky9555 Ай бұрын
Under normal circumstances, the conversation might be heavy... but Ana is not a typical child - her experiences have done a lot to build her resilience and matured her outlook on life. I'm pretty sure she's stronger and more determined than most of us adults.
@lindas6294
@lindas6294 Ай бұрын
Nana, just want to say, in everyone's life, there are things we cannot do, it's just the way it is, and just like Ana, we learn to get around it! Your daughter is an incredible little human, and an inspiration to so many. I am enjoying these videos! Much love from Livonia. 💜
@jenniferhaynes7156
@jenniferhaynes7156 Ай бұрын
Ana has been saying the name of her condition since she could talk, when I couldn't even remember how to say it. This child is amazing, super intelligent and has no problem discussing her condition. This person must not have been following you for very long to have made that comment about talking about difficult things in front of children. 🤦 Much love and many hugs to your beautiful family! #re-play
@aliciabellante6643
@aliciabellante6643 Ай бұрын
Agreed
@ElisehobbsHobbs
@ElisehobbsHobbs Ай бұрын
I have
@shamrocksandrockets1736
@shamrocksandrockets1736 Ай бұрын
Thank you for your advocacy for AMC and messaging that different isn’t always negative and can often be a beautiful superpower.
@mariacostello7363
@mariacostello7363 Ай бұрын
Replay. I have seen the pictures before but I never get tired of them! Ana was a beautiful baby and is a beautiful young lady! She is so amazingly smart! I love all of you! God bless you, Aaron, Ana and Gemelli always!
@judewade4568
@judewade4568 Ай бұрын
I enjoyed Day 2. I found it very informative. Ana has always been a ray of sunshine and so are you Nana. Blessings to everyone. ❤
@lisaepley1319
@lisaepley1319 Ай бұрын
I remember both photos. The ultrasound was crazy amazing. She was still the cutest little baby girl.
@PJDivens
@PJDivens Ай бұрын
I have seen both pictures a couple times over the years that I've been following your family! I am always delighted and amazed by the beautiful, intelligent and amazing young lady she has grown up to be!💙💙💙
@becdee
@becdee Ай бұрын
#Replay love these educational and learning more about this condition Arthrogryposis remembering how princess Ana sounded it out and her pirate Arrrgh was so cute
@cathygray4923
@cathygray4923 Ай бұрын
Nana you are a blessing to the AMC world and to your family. This video was so interesting and I learned a lot. Thank you for sharing
@lisaasher3147
@lisaasher3147 Ай бұрын
Ana is very smart. I think it is amazing she can tell about her condition. Nana you do a great job with her ❤
@dianekelley63
@dianekelley63 Ай бұрын
good to see this today very good
@user-zd2yj8jt7i
@user-zd2yj8jt7i Ай бұрын
Ana is so lucky to be exposed to so much knowledge about so many different things. She will probably produce videos soon. Precious little girl is growing too fast, she has matured so much. Always entertaining, never a dull moment watching the videos.
@rubybrown1799
@rubybrown1799 Ай бұрын
It is so important for a child to understand what they either physically or mentally condition they have they need to be educated as they are the ones that need to go through all the medical care. My son has a learning disability and he understands what his limitations are and why his mental state is. It’s so important for them to know so they can adapt to life and learn to find out ways to improve 💜🙏. Love and care is what I want to share
@brendalambert9024
@brendalambert9024 Ай бұрын
Nana, Ana is so blessed to have you in her corner. She is an amazing young lady. When I look at her, all I see is a beautiful soul and a brilliant mind. She is crazy smart. Thank you all for sharing your story and educating us about Arthrogryposis! (Thanjs to you, I actually know how to spell it, lol)
@JoanSeibert
@JoanSeibert Ай бұрын
Very informative thank you. Yes I applaud you she should be know the truth and be knowledgeable about herself.
@user-wj7yu4ft6r
@user-wj7yu4ft6r Ай бұрын
Replaying in the morning from Saskatchewan Canada .
@noellehoppe7676
@noellehoppe7676 Ай бұрын
I am so glad I got notifications!
@ficforever
@ficforever Ай бұрын
She was a beautiful baby I’ve followed you and her from the beginning and you are both amazing! I’m so glad you now have Aaron too ❤️❤️💙
@johnhenstock9668
@johnhenstock9668 Ай бұрын
Another very good and clear explanation. Very good!
@Lorrainebreternitz
@Lorrainebreternitz Ай бұрын
Great info. I look forward to this series of lives.
@patriciamcdonald4071
@patriciamcdonald4071 Ай бұрын
So precious
@julieswan9897
@julieswan9897 Ай бұрын
This is so interesting. Good that you knew before birth. So Ana could be born safely.
@shirleyhartley8076
@shirleyhartley8076 Ай бұрын
You are amazing to take this on and help Ana like you have. Thank you for being so fantastic with her. Ana can break all the records for a good life!
@KQC9127
@KQC9127 Ай бұрын
Ana, I’ve been following you since you were four. You are an amazing, wonderful girl and have accomplished so much. A true inspiration to everyone. Hado Bear and I love you and your family so much.
@tamaralott9911
@tamaralott9911 Ай бұрын
Watching replay It amazes me how far Ana has come. She is one of the strongest little girls with so so much potential. I have been following for about three years now and I'm still amazed with her many talents ❤
@lisaepley1319
@lisaepley1319 Ай бұрын
Ana I still after 4 years just love watching your cute face! Lol. You've grown so much.
@gillianart
@gillianart Ай бұрын
Watching you both talking about AMC from birth is very informative and interesting, Ana is an amazing little girl and as I can imagine so are all the other people living with the conditions. You are doing a great job raising awareness and help for other families. Don't stop xxx
@barbfabin665
@barbfabin665 Ай бұрын
Great information. Interesting to know and understand
@KSalmon74
@KSalmon74 Ай бұрын
Yes, doctors need to be educated more about the prognosis they give mothers having kids with certain conditions. With Spina Bifida my mom was given the same type of grim prognosis you all got. Here I am now almost 50 and an attorney. I do have some associated health issues but they are treatable. I also live on my own
@jacquelinekramer5108
@jacquelinekramer5108 Ай бұрын
Thank you for sharing!❤
@lindakrell7754
@lindakrell7754 Ай бұрын
Watching replay. I love seeing and hearing you explain everything.
@disneygrandmamad3395
@disneygrandmamad3395 Ай бұрын
I missed the live, sadly. I did see her ultrasound way back when and it’s amazing how far she’s come!
@juneeaves1773
@juneeaves1773 Ай бұрын
Watching replay. Ana has come so far!
@rosiespain7445
@rosiespain7445 Ай бұрын
I missed the live, but thank you.for the information. It is great to.lesrn more about her condition. Ana you inspire me, you make me want to.try harder in my own life. Thank you 🌹
@lindas6294
@lindas6294 Ай бұрын
What a cute baby! 💜
@dianejackson2057
@dianejackson2057 Ай бұрын
Watching replay
@Jackie-gb1rt
@Jackie-gb1rt Ай бұрын
Thank you for this…. You are so kind and this is so informative ❤️
@cheriluzer5623
@cheriluzer5623 Ай бұрын
Thanks for the information. I think you explained it very well. Ana is a beautiful young lady.
@michelereed8844
@michelereed8844 Ай бұрын
# replay. You are very informative!!
@user-kr8tf7pz2r
@user-kr8tf7pz2r Ай бұрын
Gracias por compartir
@lindas6294
@lindas6294 Ай бұрын
Ana, I love your hair, I've always been such a fan of braids. I used to have braids all the time when I was younger! 💜
@user-uj7jc2gb7p
@user-uj7jc2gb7p Ай бұрын
Thanks!
@lindas6294
@lindas6294 Ай бұрын
Ana looks so much like you Nana!! 💜 Much love from Livonia!
@sherryhall9601
@sherryhall9601 Ай бұрын
I'll check this out later getting ready for work
@noellehoppe7676
@noellehoppe7676 Ай бұрын
Ana, I love your laughter!
Ай бұрын
#Replay I so appreciate the educational explanation today. Sorry that you are having issues with FB. I’m trying to learn KZfaq so I can continue to follow Ana. Please continue extending grace to us newbys 😂
@haroldconnolly9684
@haroldconnolly9684 Ай бұрын
Nana I like your information about Anna’s condition it is very interesting and educational so amazing
@daphnejohnson6167
@daphnejohnson6167 Ай бұрын
She is so beautiful
@maureenlough1323
@maureenlough1323 Ай бұрын
Watching replay Hi Ana and Nana xx
@tonyagenerally8468
@tonyagenerally8468 Ай бұрын
Thank you for sharing this information. We are all different and we all have something to contribute to this world. This world would be boring if we were all the same! In a world of Cheerios be a Fruit Loop!!
@user-vg1js1qv4m
@user-vg1js1qv4m Ай бұрын
Nana I am enjoying learning. I don't do Facebook. I enjoy KZfaq and see your videos
@daphnejohnson6167
@daphnejohnson6167 Ай бұрын
Ana is so awesome
@larryhumphrey361
@larryhumphrey361 Ай бұрын
She's came a long way and she so cute ❤️
@sharansmith8335
@sharansmith8335 Ай бұрын
Ana you look beautiful! and I love your hair! ❤
@juliekindorf5634
@juliekindorf5634 Ай бұрын
You look gorgeous Ana.
@evelynsharp8052
@evelynsharp8052 Ай бұрын
#replay Wishing you and your family the best. I don't mind watching your livestreams here or there instead of fb. I tried getting accepted to your new community, but it unfortunately still says, "pending approval." No hurry, it just bums me out knowing I'm missing what you're sharing there. Lots of love and positive vibes to you all!
@janetjackson7031
@janetjackson7031 Ай бұрын
Our son, Vance Booher is 36 years old. He is my fourth born son. I knew around my six check up that there was something definitely different with the pregnancy. Having three prior pregnancies you just know if there’s something different. Vance was not moving very much at all. I had seven ultrasound during my pregnancy and not one did they determine that there was anything wrong. While in utero, he was folded in half. His legs are straight up with his feet on each side of his ears, and his arms stretched down on top of them with club hands hands and clubfeet. I told my ultrasound tech and my doctor that it felt like when he would move it was like a fan unfolding stretching from the field position out to looking like a fan. They told me everything was OK. In my ending of my eighth month of pregnancy I had the last ultrasound, he was breach. Again, no mention that anything was wrong except the tech said that babies getting all kinds of positions, and he will move his head down when it’s time for birth. My doctor was leaving for vacation at the end of my ninth month. I asked him to please stay and deliver my baby because I feared something was wrong. A few days before my due date my water broke in the elevator at the hospital, so the timing was good. My doctor was at the hospital. When Vance came out, his head was first with his feet positioned on each side of his ears. I asked the doctor what was wrong with his ears. He looked at me and he said, ‘That was his feet.’ They then moved the mirror so I could not see the birth. I told my husband to go check him and see what’s wrong. I could see in his face when he was looking at the baby that there was definitely something wrong. After the delivery, they took the baby over to the nursery bed to examine him. I could see his legs moving up and down towards his chest in his face. My doctor had a tear in his eye, and he said that he will make sure that everything is taken care of and he would get me a doctor to come and talk to me about what possibly is wrong with my son. What I could see was that there was no definite view of an elbow or knees. His arms and legs would not bend. A few hours after recovery, I went to the nursery to see my son. He wasn’t with all the babies. They had him in an isolation room, out of view. I went to get him, and he seemed so small. Because his legs were folded up on his chest his body was wrapped up in that blanket. I asked the nurse why he was in this isolation room and they told me that a lot of people were asking questions about him. So they moved him. I told her to put him with the rest of the babies. Even at that moment, I knew that I had to treat him as best as I could with a normal life as I possibly could. Then the research began. At three days old we went to Scottish Rite Hospital in Dallas, and received the diagnosis of Arthrogryposis multiplex congenita. The same diagnosis as Anna. They did tell me that he will probably not walk, and he probably would never feed himself. I asked them to not ever tell a person that because they may be that mom who goes home and not do much with their child because they think that’s what’s going to happen. I was going to do everything possible to make sure he had a good life and do all I could to make sure he was as independent as possible. I experience a lot of things that you did too. Physical therapy, stretching and bending his elbows and knees to the point where he’s at right now at about 60° flexion and his knees and 60° flexion in his elbows. He tells everyone his left side doesn’t bend as much because I’m right handed. He said when I would do his physical therapy, that I would naturally work more on the left side because of that. He tells people that tongue-in-cheek, because he is a natural comedian. I love that he can laugh about things. He had bilateral club foot surgery at one year old. His feet are still a little bit curved and his toes are a little crooked but he’s OK. He does not want any more surgeries or to do anything else besides his regular workouts at the gym.. When I asked him if he wanted more surgeries done he told me that what is normal to him is the way he is. My son is very active at 38 years old. He graduated high school. He works full-time and lives on his own. He has a beautiful 11 year old daughter. He goes four wheeling in the mountains, he can drop a gas tank and replace a fuel pump by himself. He has a custom car and has a car club that he started. He is a professional photographer. He plays guitar and piano self taught. I’m very proud of him. He never complains. Thank you for sharing Anna’s and your family story.
@janetjackson7031
@janetjackson7031 Ай бұрын
My apologies for Ana’s name texting wrong. I am talk texting and missed that on proofing. I also wish I could have been able to post a couple of pictures of Vance as well as one of him with his daughter. I think it’s important for people to see that a lot of people with AMC have relationships, marriages and children. ❤ Have a blessed day.
@janetjackson7031
@janetjackson7031 Ай бұрын
Also you can see and hear my son talk about living with a disability: Arthrogryposis by searching him on KZfaq typing without spaces shotsbyvancefilms and hit search you will see him wearing a pink button up shirt. Thank you.
@janetjackson7031
@janetjackson7031 Ай бұрын
Also you can see and hear my son talk about living with a disability: Arthrogryposis by searching him on KZfaq typing without spaces shotsbyvancefilms and hit search you will see him wearing a pink button up shirt. Thank you.
@AMCPrincessAna
@AMCPrincessAna Ай бұрын
Oh my gosh!! Thank you so much for sharing your story!! Sending super big hugs to you both. 💙 💙 💙 You are a warrior mama. Back then you guys didn't even have the support group with all the moms in one place. You were truly on your own and you did it!! You did an amazing job!! 🥰🥰🥰🥰 These kiddos are truly something else but so many of them have some pretty kick ass parents behind them, as well!
@janetjackson7031
@janetjackson7031 Ай бұрын
@@AMCPrincessAna Thank you so much for your kind words. We definitely didn’t have the resources that are available now. We wrote emails and letters to each other as we met at the hospitals. Over the years I would run into a person (adults and children) with AMC and I would always approach them and talk. I’ve met people who never got a diagnosis and introduced them to Scottish Rite Hospital. It’s been a trip! My son is absolutely amazing! His three big brothers are as well. They are very close. And… you’re right. There have been a couple of people who didn’t want to talk to me or learn exactly what their child’s diagnosis was. Very sad. You’re a rockstar and so is Ana!
@haroldconnolly9684
@haroldconnolly9684 Ай бұрын
Good night you guys have a good one
@user-px1jy6kz5j
@user-px1jy6kz5j Ай бұрын
Hi beautiful ladies!💕
@avlnavybrat
@avlnavybrat Ай бұрын
Forever beautiful ❤😊
@ellenwheeler2031
@ellenwheeler2031 Ай бұрын
Ana, your pigtails are so long! Beautiful!
@cphawaii
@cphawaii Ай бұрын
Lilo boo boo.... and look at her now....❤😊
@victoriafeldhaus2871
@victoriafeldhaus2871 Ай бұрын
I remember the ultrasound and infant Ana.💖
@CarieBurtner
@CarieBurtner Ай бұрын
I think the mentality to hide things from kids is well-meaning but misguided. Kids figure things out, they understand way more than adults give them credit for. Giving them knowledge is power, it's acknowledging their intelligence and helping them navigate the reality of life. They can be a kid AND have a "heavy" conversation. This gives them a greater understanding (especially when they have complex conditions such as Ana). Kids can handle way more than you think. And Miss Ana is an amazing example of this great combination of intelligence, maturity, strength, but retaining the magic of being a kid and loving life.
@PamelaCollander-Kane
@PamelaCollander-Kane Ай бұрын
#replay ❤❤
@MelissaHuntsman
@MelissaHuntsman Ай бұрын
Ana’s hair and dress are super pretty today that color really suits her.
@amyschiavoni6315
@amyschiavoni6315 Ай бұрын
Awe beautiful girl.
@noellehoppe7676
@noellehoppe7676 Ай бұрын
Interesting coffee advice!
@nedragilstrap1202
@nedragilstrap1202 Ай бұрын
Anna was beautiful from the day she was conceived n still beautiful.
@angelgarrett2638
@angelgarrett2638 Ай бұрын
She is a Doll
@WendyCheney
@WendyCheney Ай бұрын
Ana is perfect and beautiful!
@cindyhenning7832
@cindyhenning7832 Ай бұрын
I have seen the picture. Been following a long time
@noellehoppe7676
@noellehoppe7676 Ай бұрын
I think i have seen them all!
@marionmirault4054
@marionmirault4054 Ай бұрын
I have seen the pictures of when she was just a little baby… beautifull then beautiful now 🥰
@pattyelvsaas7017
@pattyelvsaas7017 Ай бұрын
Yes, have seen both
@cookiesuskevich6850
@cookiesuskevich6850 Ай бұрын
❤❤❤
@user-kw3cl9cb7v
@user-kw3cl9cb7v Ай бұрын
Sorry I missed the live. I've been really busy outside getting things done.
@user-xh3cs4sb2w
@user-xh3cs4sb2w Ай бұрын
I got the link to this video from your post on Facebook 😊
@sherrygoodwin9820
@sherrygoodwin9820 Ай бұрын
💙💙💙💙 everybody gets a blue heart in honor of AMC Awarendss Month. Love to all of you.
@TamelaLayman-xf9vl
@TamelaLayman-xf9vl Ай бұрын
❤❤❤❤❤❤❤❤
@marydiantonio6148
@marydiantonio6148 Ай бұрын
Anna you are a beautiful young girl. ❤
@Streepjesbeest
@Streepjesbeest Ай бұрын
@cathywilliams5414
@cathywilliams5414 Ай бұрын
?you like zebras?
@patriciagaskamp2960
@patriciagaskamp2960 Ай бұрын
Beautiful from birth on❤
@goodcookandherguineapigand5122
@goodcookandherguineapigand5122 Ай бұрын
I am new to your videos
@deannasmith4118
@deannasmith4118 Ай бұрын
I have ❤
@juliekindorf5634
@juliekindorf5634 Ай бұрын
I have.
@celiabilling
@celiabilling Ай бұрын
Love you all❤❤❤
@bonniemiller5316
@bonniemiller5316 Ай бұрын
I did.
@lesliesteffy6275
@lesliesteffy6275 Ай бұрын
Seen both pictures🩷
@haroldconnolly9684
@haroldconnolly9684 Ай бұрын
I’ve got a great niece that was burned with spinach bifida she is around Ana’s age and doing pretty good on getting around like Ana does
@LesleyJordan-st4hl
@LesleyJordan-st4hl Ай бұрын
I want to send a support amount. Trying to figure out which place I should visit. I had a daughter born with AMC in 1988. I want to send stars n support your family
@noellehoppe7676
@noellehoppe7676 Ай бұрын
Ana, do you like your braids? Are they helping you stay cooler?
@ConnieHinshaw
@ConnieHinshaw Ай бұрын
I have
@PatriciaGillman-ie1pi
@PatriciaGillman-ie1pi Ай бұрын
Can AMC ever effect cognitive abilities? I know not for Ana - she’s a genius! 22:56 22:57
@amyschiavoni6315
@amyschiavoni6315 Ай бұрын
👋
@amyschiavoni6315
@amyschiavoni6315 Ай бұрын
The notification page doesn’t work when clicking on the link to go to facebook.
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