Frequently Asked Questions

Ana has a rare condition called Arthrogryposis Multiplex Congenita or AMC for short. That is why she goes by AMC Princess Ana. It's not "Princess Ana" - it's "AMC Princess" 💙

 

AMC is a condition that affects the joints and muscles. Babies with AMC are born with stiff joints and weak muscles and often have to undergo extensive casting, surgery, treatments, and therapy to gain mobility and independence. There is no cure for Arthrogryposis. There is only treatment and therapy to improve function and then ongoing therapy and work to maintain that function because Arthrogryposis is a regressive condition, meaning...if treatment is not maintained and the body not used/moved, function will be lost and the body will try to regress back to how it was at birth.

 

When Ana was born her legs were stuck in a bent position and her arms were stuck completely straight. She started a process called serial casting when she was just three weeks old where, over the course of 10 weeks, they put casts on her legs and changed them each week, slowly straightening her legs out and molding them into a proper position. She's had multiple surgeries to correct the position of her feet, give her arms the ability to bend at the elbow, straighten her legs so she can walk on them, and more. She's also had countless hours of therapy.

 

Here are some videos where Ana teaches everyone about her Arthrogryposis!

How to say Arthrogryposis
Ana's Arthrogryposis Awareness Series
Getting a bendy arm
Ana's 2-year leg-i-versary

Ana was born on November 6th, 2015.
Here is a video of her talking about her most recent birthday!
Five-year-old talks about her birthday!

Watermelon!

 

Ana is one of the least picky eaters I've ever known. She loves most foods. It's easier to make a list of what she does not like vs. what she likes. One thing she doesn't like right now are olives. Green, black, kalamata, doesn'tmata ....she doesn't like them! lol

If you had asked her a year or so ago, she would have told you an adult. Until Ana was about 3.5 years old, anytime and everytime you asked her what she wanted to be when she grew up she would say an adult. (If you asked her why, she would say "so I can say bad words". 🤣) But once she turned four years old she started to have an idea of all the things she might want to do when she grows up. Keeping in mind this will change 1000 times between now and then, here are just some of the things she has mentioned in the past year.

  • doctor
  • astronaut
  • gymnast
  • scientist
  • actor
  • dancer
  • teacher
  • singer
  • mom
  • chef
  • producer

Ana is homeschooled!

 

Ana had 1.5 years of Montessori preschool prior to the pandemic. When I lost my job in Feb 2020, I pulled her out of PreK and decided to stay home with her full-time. I've always wanted to be able to homeschool Ana and she thrives in an environment where she can learn at her own (rather accelerated) pace. Looking on the bright side of things, this pandemic has given me the opportunity to achieve that goal of working from home and homeschooling Ana and by being a part of our story and watching our videos, you all are giving us the blessing of having the freedom to do just that. Our lives have definitely changed for the better. Thank you!

Short answer: I am both and you can call me Nana or Ana's Nana or Ana's Mom and they would all be correct/accurate. I AM Ana's Mom/Mother. I am also her Nana. (Ana only calls me Mommy but refers to me as Nana/her Nana when talking to others about me). I am NOT Grandma (that's my mother). Please don't call me Grandma or Ana's grandmother. I really kind of hate it. haha! I am not her biological mother but I am her mother in every other possible way.

 

 

Long answer: Biologically I am Ana's Nana. However, in every other way and in every sense of the word I am her mother and I have been since she was 4mo old. I am a single parent and the only parent she's ever known. I do not go by Grandma. Please do not call me "Ana's Grandma" haha! Ana's Grandma is my mother. Her Grandpa is my father. She knows they are really her Great Grandparents but that's how we do it in our family.

 

Just as an adopted child knows another adult as their Mom or Dad, Ana knows me as Mommy. She started calling me Mommy on her own accord when she was about 2.5 years old. Ana's Mama (biological mother) knows (of course) and is perfectly fine with it. Ana understands her family dynamics very well and that is why you hear both Nana and Mommy in our videos.

 

Ana never calls me Nana anymore when she's talking to me. She only calls me Mommy and has for years. However, whenever she is talking to you guys and referring to me, she will say Nana. That is why you hear, "My Nana" this and "My Nana" that in the videos. In the videos from before she was 2.5 you can still hear her call me Nana when talking to me.

 

We choose not to publicly discuss the circumstances surrounding how this arrangement came to be the best situation for our family, whether her parents are involved, etc. for numerous reasons, respect and privacy to start. That information is personal to Ana and her parents and not something she wants to share nor would we talk about her parents "behind their back." They are not a part of our social media life and not the focus of why we are on social media, therefore, there is no reason to discuss her biological parents. We ask everyone to respect that decision and their privacy and understand that the only people who are privy to such personal matters are those who are a part of our biological family. I currently have legal guardianship of Ana and my intention is to raise her to adulthood.

We choose not to publicly discuss the circumstances surrounding how I ended up raising Ana and how this arrangement came to be the best situation for our family, whether her parents are involved, where they are now, etc. for numerous reasons. Respect and privacy to start. That information is personal to Ana and her parents and not something she wants to share nor would we talk about her parents "behind their back" and on a public forum. They are not a part of our social media life and not the focus of why we are on social media, therefore, there is no reason to discuss her biological parents with anyone on social media. We ask everyone to respect that decision, respect their privacy, and understand that the only people who are privy to such personal matters are those who are involved in the situation and/or are a part of our family.

Ana started reading when she was two years old.
Here is a video that will tell you all about it!
How my five-year-old started reading at two!

If you look back at videos pre-pandemic you will see some videos of Ana with other kids but you have to realize, many people have no interest in being on social media. When we are with others, I am very mindful of whether or not they want to be recorded and give permission for those recordings to be on our site. Most of the time I don't bother them with it so (when we're not in the middle of a pandemic) there are many interactions you never see and never will. Even when she's in lessons or at an appointment, I always ask before we film anything to make sure everyone who will be shown has consented. People also seem to forget, we film just a few minutes of our daily life, most days. There are hours and hours of our life that happens that you never see so to assume the content we put on Facebook or YouTube for public consumption encompasses all of our life would be incorrect.

 

That being said, we ARE in the middle of a pandemic and Ana and I are both high-risk for the virus so neither of us has any desire to risk illness simply for a play date. We aren't even spending time with family. That aide, Ana has always (literally, since she was born) been super comfortable being an only child. She's always had a strong and long attention span and she's always enjoyed doing things on her own. She doesn't even ask ME to play with her most of the time! Ha! She has an amazing imagination and keeps herself occupied for hours. It helps that we have a lovely variety of educational and engaging toys/books/activities for her to do at home. She loves homeschooling and being able to move at her own pace and she loves being able to run the show. lol

 

Ana had two years of day care/school with other kids, including attending a year and a half of Montessori Preschool, prior to the pandemic. She had plenty of daily social interaction and did just fine with it but now that she's old enough for public school and given how advanced she is (currently schooling at a second grade level in "Kindergarten"), she would not be well served, well occupied, or challenged in a group setting with other kids her "same age" in a public school system.

 

That type of social interaction is fine for the purpose of free play but even then she would end up off on her own doing her thing as she is quite far ahead of other kids her age cognitively/communicatively/emotionally. It makes it difficult to enjoy playtime when you're with kids who can't understand or do/enjoy the same things you can. Ana frequently takes various classes and lessons with other children (even these days, via Zoom) so she interacts with other kids who are interested in and actively doing the same things she wants to do (academic classes, dance classes, etc.) and she definitely enjoys those interactions.

 

Ana very much thrives on being challenged and keeping busy. During this pandemic she has never once asked to see other kids, play with other kids, be around other kids, etc. She is not one of those kids that requires other kids. Some kids do! Ana does not. As is apparent in her videos Ana is extremely happy, healthy, intelligent, well-rounded, and content with her lifestyle if she were someday not, it would be my responsibility to recognize that and work to rectify the situation. She didn't get to where she is today by me being a negligent parent. 🙂

Just about! I know this probably sounds impossible but she honestly is happy about 90-95% of the time. I always say, Ana doesn't have bad days, just bad moments. She has always had an incredibly optimistic personality and the ability to rebound from sadness, disappointment, and frustration quickly. Her inherent character traits are a big part of the reason why she's been able to adapt and overcome struggles and managing her condition so consistently over the years! She regularly shows me how to be a better person. I have learned a LOT from Ana over the years!

The primary reason we share our life online is to raise awareness for Ana's condition. Arthrogryposis is rare and most people have never heard of it, even doctors and nurses! Every day there are doctors all over the globe who advise mother's pregnant with babies diagnosed with AMC to terminate their pregnancies. Every day AMCers are improperly diagnosed or worse, given improper treatments or have unsuccessful surgeries because they are seen by medical professionals who are not familiar with the condition. Every day parents of newly diagnosed AMCers are feeling isolated and alone because they haven't yet found their small but mighty network of #AMCFamily online.

 

Ana was diagnosed with AMC at 18 weeks gestation and, like most people, we had never heard of it. I immediately went home to research the condition and found The Arthrogryposis Group on Facebook. After posting in there and starting to talk to other AMCers and AMCFamily I quickly realized how valuable sharing information this way was going to be. Over the coming months I met multiple families, was able to see photos and videos of other young AMCers, and talk to the parents about where they were going for treatment, who they were seeing, etc. It was then I decided I wanted to be a part of the information sharing, to help other families who would come along after us. It was then that I created a private group on Facebook for our family, friends, and other AMC families to join, where I could update everyone on Ana's progress and our life in one fell swoop. I also created our YouTube channel so I could upload and share videos with the group and others.

 

By the time Ana was two years old we had over 500 people in the group. Some of the folks wanted to invite their friends and family and it was quickly growing into a space where I could no longer share more personal information because there were too many people I didn't personally know in the group. It was the same year I made the decision to take Ana down to Dr. Feldman at The Paley Institute in West Palm Beach, Florida for surgery and treatment on her legs, she she would be able to walk. Since the procedure at the time was still new and ground-breaking I knew more and more people would want to follow what was happening with Ana and I wanted to reclaim the privacy of my private group so I made the decision to go public with our story.

 

In the summer of 2018, the AMC Princess Ana Facebook page and Instagram page were created. For a very long time we only had a couple thousand people following the Facebook page. I worked full-time and posting on social media was just something we did periodically to provide updates. I did document her whole surgery with Dr. Feldman in the winter of 2018 and the first part of 2019. It wasn't until the pandemic hit and I lost my job in Feb 2020 that I started posting on our social media full-time.

 

In March 2020 we had about 5000 followers on the AMC Princess Ana Facebook page, something like 500 on our YouTube channel, and probably a couple thousand followers on Instagram. As of April 2021, we now have over 150k followers on Facebook, over 6k on YouTube, and almost 24k on Instagram. We've raised awareness across the globe, met tons of new #AMCFamily members, reached and communicated with many new mothers, raised ~$20,000 for AMCSI, started our own nonprofit to help AMCers and AMC family, and more. It's been quite a ride and we're not done yet! Through sharing our lives online, we've been able to make a difference, in ways even bigger than I ever imagined when I started that private Facebook group. 💙

I have not! I do hold a Masters degree but I find this question amusing when I see it because I've actually never had any desire to be a teacher and I feel like I would be a terrible teacher! Ha! I enjoy teaching Ana because she is mine and because she is so eager to learn. 🙂 Who knows how things would be if circumstances were different. All I know is what they are and we seem to work well together on that front. 💪

We post almost every single day on Facebook and most days on YouTube/Instagram; however, Facebook has an engagement requirement in order for you to see those posts so I hear frequently from folks who just aren't seeing our content and don't understand why. Hopefully, this explanation will help!

 

Most people tend to originally run across our videos on their feed while the are scrolling. Either they pop up as a recommended video or they've watched a couple of our videos and clicked to follow the page so, once you do that Facebook will put more videos in your feed here and there but if this is the only way you visit us then you are only seeing a mere fraction of our content and if all you ever do is scroll and watch the videos Facebook shows you, eventually Facebook will stop showing you our videos/posts.

 

Facebook considers engagement an intentional interaction with the video. Not just watching it but reacting to it (by clicking like, love, or even hate), by commenting on the video (not an image or a couple words but a sentence or two), and by sharing the video on your own feed. When you engage with the posts, Facebook keeps track and they realize you actually DO want to see our posts and then the computer algorithm will make sure to continue including them in your feed. Although, this still doesn't ensure you see MOST of the posts we make and it won't keep you up to date with our daily posts. The videos you see will often be out of order, jumping back and forth through time.

 

To see our daily posts you will want to get to the AMC Princess Ana page on Facebook and once you're there, you could bookmark the page on your device to make it easier for you to return each day.

The other thing you can do is let the Facebook computer algorithm know you want to keep seeing our content.
In order to let Facebook know you want to see our content regularly you have to do a few things. 

 

  1. You have to go to the page and click the FOLLOW button (to get to the page, type AMC Princess Ana in the search bar at the top of your Facebook page) Once you get to the page the FOLLOW button will be right there near the top.
  2. Make a point of going to the page on a regular basis. Every day, every other day, 2x a week, every weekend, whatever you do just try to do it consistently so there is a regular, recurring interaction with our posts.
  3. When you watch a video, make sure to "react" to the post (use the emoji reaction to like/love/hate the post - we hope you don't hate our posts but...some people do! lol)
  4. After watching the video be sure to leave us a comment! Sometimes I have time to jump on and react/respond to some of them! Just don't leave a nasty/rude comment or it'll be removed by the moderators.
  5. After leaving your comment, click the share button at the bottom of the post to share it to your own Facebook page so others can see it!

 

If you interact with the posts in those ways on a fairly regular basis then you should regularly see most of our daily posts and even get notified when we post a new video or go LIVE.

 

I hope this information helps! We definitely appreciate your support, your loyalty, and your interaction! The more you interact with our posts and watch our videos all the way through (not skipping any ads!) the more people get to find/follow our page and the more folks learn about Ana and her condition. If you want to support us in an even bigger way, click the SignUp tab on the menu here on the website and learn more about becoming a monthly subscriber! Thank you!!

 

You can click here now to be taken directly to our Facebook page to click that FOLLOW button and bookmark the page!

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