Testimonials - AMCSI: Supporting the Arthrogryposis Multiplex Congenita Community

Testimonials & Feel-Good Stories

Do you have a favorite story to share with the AMC Community about how AMCSI has helped you through grants, scholarships, conferences, or how we have improved your life? We’d like to hear about it! Email us at info@amcsupport.org or fill out the form below!

Read our Testimonials & Feel-Good Stories below the form & share the AMC love!

Testimonial Submission

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“We have been members of AMCSI since 2012. Our daughter Red was born with Arthrogryposis multiplex congenita. We’ve been blessed to attend the annual conference since she was 5 years old. She just turned 18. The pandemic stole 2 years of conferences. This past year has paid a huge toll on our finances. We’ve also had a lot of medical and personal stuff going on. Both of our older cars have taken turns being in and out of the shop. At one point they were both unusable. We were drowning in debt. We put our pride aside and applied for the holiday grant. We were very surprised and appreciative when we found out we had gotten it. It took a lot of stress off of us. We were able to get stuff we needed as well as be able to buy her a couple of things. It was the lift we needed to get us back on our feet. We couldn’t have done it without this grant from AMCSI <3 This organization has blessed us in so many ways. Physically, emotionally and now financially. We look forward to being able to go to conference again this year, we especially enjoy volunteering our time as well.”

~ The Fisher’s

“I want to say Thank you so much to AMCSI for helping our family out this holiday season. 2023 has been a roller coaster of a year and our family has experienced so much financial hardship, Ending the year with losing most of our belongings with our house flooding, and If that wasn’t enough, Our AMCer Jhay breaking his leg in December in a wheelchair accident, Causing a lot of missed work for me as a single Mom right around the holiday season. I am grateful to AMCSI for sponsoring our family for the holiday fund. The children were able to receive some nice gifts, We were able to put food on the table in a time of need and catch up on bills we had fallen behind on. Thank you so much! We are forever grateful for our AMC Family! We love you guys! Jhaylen personally says Thank you as he was able to get a new bed set and legos!”

~ Jhaylen R.

“When I saw that the testimonials & feel-good stories had open forms I knew it was time for me to share my story because the community really has changed me in a great way.

Originally, I didn’t have any self-intentions when going to the conference, other than to go, meet a few people, and just have fun. Going I did not do any research other than purchasing my ticket. Before this, my AMC community was small and limited to two people, whom I already did not talk with much. Growing up my resources and community were nothing and I was never told great things about the AMC community in general. My mental health at the time was rapidly declining and I didn’t know why so I figured I would at least connect with a few people whom I could relate with.

The first conference I went to was the 17th annual in Orlando, I had just turned 18, the conference was in my home town so I easily could get there. In the first 45 minutes of me being at my first conference, my entire perspective of the entire community changed. I was greeted, introduced to many, and shown around as it was kind of intimidating. The positive energy and warmness that just poured out was unbelievable, I immediately knew I was in the right place. The entirety of the conference was so informative, I learned so much more than I intentionally thought I would, and confirmed for me that I was in the right spot of connection, love, and support. After the conference was over I knew I just had to go the next year.

The 18th annual conference in Ohio opened me to a whole new level of acceptance I felt. Going to this conference I had intentions, I wanted to find resources, hear others’ experiences, make forever connections, and really open myself up to better mental health resources, and that is exactly what I was able to do. I finally felt “home” enough to let others in and be open. I will forever say this but there seriously is not another group of people I will stay up till the sun comes up with just talking and bonding. Hearing others’ stories, experiences, tips, etc., and bonding with the right people helped me find self-acceptance and realize I will never be alone and my resources are right here in this family of the AMC community. The energy and comfort I felt around every. single. person. was unmatched and I can not express how grateful I am for this community that I call family. The annual conference will be something I no longer miss, I will be there, to share, to listen, and connect.

“Remember, this isn’t goodbye, this is see you later. <3”

~ Kylee

“It improved my life! To meet another people with same disability, and learn more about AMC too. And when meet up with Dr. Hall she told us I had distal arthrogryposis, and why!🙂💙👍

And after the first conference in Kansas City! My sister asked if she could started Facebook group for Canada! She was with us too. I am happy they accept it, and we had mini meet ups around in Canada.”

~ Amanda

“We are new to the AMC community, yet we are not.

In 2019, our family began our path to adopt a little girl with suspected Arthrogryposis. We scrambled to complete paperwork, much of it very familiar as we had completed an adoption with this country several years prior. We took this time to also familiarize ourselves with AMC and that is how we found AMC Support. We learned that you offered an adoption grant and we applied, knowing there were likely so many in need. And we were humbled when we received a very generous check in the mail, an incredible help to offset adoption costs. We got much more familiar with AMC through your resources, yet still had so much to learn.

We completed all paperwork in 6 months are got approval to travel to her in January 2020. We booked our flights and had our adoption appointments in country scheduled for February 2020.

And then…COVID. The pandemic shut down our little girl’s birth country. And we were told to cancel our flights and wait. Little did we know that the country would remain closed to tourists of any kind for YEARS. We waited, often not knowing if we would ever meet the little girl we had fallen deeply in love with. We sent her letters and photos and occasionally saw glimpses of her via photo or video. We waited. And we waited.

During this time, we also dug deeper and deeper into the world of AMC. We still sat on the outskirts, perhaps needing to know and learn and grow to help her thrive. So much was uncertain. But we followed AMCSI on social media and frequently went to the website. We reached out to local facilities such as Shriners New England and Boston Childrens.

AND we waited, yet. In fact we waited for 3 and a half years. And then suddenly, we were invited to travel once again.

In June of this year, we traveled to China and finally met our daughter. She has been through so much, yet is thriving and full of joy. And she is determined, motivated.

She was positively diagnosed with Arthrogryposis by both Shriners and Boston Children’s. She received very minimal treatment up until now and is quickly showing us how motivated she is to move. She has a loaner wheelchair, has been fitted for her own and is beginning her first surgical treatment in January. She thrives in therapy and is thrilled to be able to be on the move!

Thank you to AMCSI. Thank you for the adoption grant. And thank you for being an incredible resource. We anticipate becoming a bigger part of this community.”

~ Fitzgerald family

Ani joins Shameia in Greenville, SC to hand deliver some great news! All smiles and just a few tears shed as we close out our Hardship Grant program. Ms. Shameia was the recipient of our final hardship grant. She would like to thank AMCSI’s board of directors for their prompt decision and our donors for their support. The Hardship Grant has been reestablished as the Accessibility Grant that will assist many of our AMC families with ADL tools that will be instrumental for independent living. Please follow the link to apply.

“To say it’s been difficult to find the words to talk about this experience is an understatement. I was gifted the opportunity to attend a conference on Arthrogryposis (AMC), the condition I was born with. I never met anyone in person with AMC until this trip that I was so blessed to have received! I have really been unable to put into language what this incredible trip has brought me. Community, friendship, education, resources, self-acceptance, memories, hugs, some of the rawest love i’ve ever witnessed & felt to name a few. I received more hugs during this trip than I have in the past year.. The people in this community love BIG and I can’t explain how much my heart has been filled by them all. The way this community has loved and uplifted me is unmatched. I have been terrified with planning my medical future alone and this has given me HOPE. This experience has truly taken my heart and ran with it. I’m so immensely grateful to have made it in those rooms, to those that made this happen for me, and to all that made this whole conference possible in general.. There are truly no words I could use to explain what you’ve done for me and my heart and my FUTURE, but thank you a million times over.. See you next year!”

~ Kahzryn

“A few weeks ago, Ani Samargian called me after an absolutely terrible day and gave me the most exciting yet terrifying opportunity of my life. This weekend I went to the Arthrogryposis Conference in Ohio, to tell me I was chosen for one of the scholarships. I had never gotten the opportunity to meet anyone like me, being that my disability is so rare. When I got there, I was hoping to run to my hotel room to prepare myself. But as soon as I walked in the lobby, I was faced with what I never thought I would experience. Not one, but maybe 50 others with my condition. Adults and children. I wasn’t ready but it was happening. So many emotions rushed through me and I just found a seat near the entrance and cried. Tears of relief that it finally happened, but also fear, and the overwhelming truth that I needed to face. I have AMC and I always will. I was a child that was traumatized and afraid, insecure and full of self hatred and closed off to the world. Confused and alone and ashamed. I needed to be free. All these years i carried these feelings into adulthood and all it did was hurt me. Since Ohio, I’ve felt lighter. Like a weight has been lifted and like I’ve finally looked in the mirror after being invisible for over 20 years. It feels as though my inner child finally got a big hug and was told that she would be okay. That she wasn’t all the things people told her she was. I can never thank you enough, Ani. You gave me the greatest gift I’ve ever received and helped me meet people that will be in my life forever.”

~ Skyler

“There are few words to encompass the emotions of attending the AMCSI conference for the first time and as a grant recipient. I am 28 years old and had not met another individual with arthrogryposis until this year. Stepping into a space full of other individuals who look like me and who understand my disability in a way no one else in my life ever has felt like coming home. It would not have been possible for me to attend conference this year without the support of the Brayden Dame Scholarship. I am forever honored and grateful to have received this incredible award and for the opportunity to spend time with members of the Dame family. They, along with countless other AMCers, embraced me and helped me feel like an instant member of the AMC family. The conference provided me with invaluable connections that have made me feel so accepted and excited to immerse myself further into our community.”

~ Kristen

Love my AMC family and all the support there is for each other

"Arthrogryposis Multiplex Congenita Support (AMCSI) is a wonderful organization for parents who have just learned that their baby/child has AMC. When our daughter was born in the late 90's, we were told she had Arthrogryposis Multiplex Congenita (AMC). At that time there were very few resources available for us to learn more about this condition. In 2009, our daughter's Physical Therapist encouraged us to attend the AMC Conference in Philadelphia. We were excited to learn all that we could about this condition. It was certainly a life changing experience not only for our daughter but for us as parents. It was the first time our daughter saw other kids her age with the same condition and now has made life time friends. And for us as parents they arranged workshops that we attended to learn from Doctors and Medical Professionals and we met so many wonderful families. It gave us a chance to compare experiences with these families and become friends. AMCSI not only provides conferences every year for the families but they do so much more all year long. Also, it should be noted it is a volunteer organization. We owe many thanks to everyone associated with AMCSI!!"

"By far, finding AMCSI has changed my wife and mine lives! Before finding AMCSI, neither one of us had ever met anyone else with AMC, my diffability. Now, we have been to multiple events sponsored by AMCSI that we have been able to meet others like me, network, learn and grow! They also helped support us financially when we were going through a rough patch with my health and some students were doing a Lift Up Bobby fundraiser for a lift on my vehicle for my scooter. I don't know where we were be without AMCSI in our lives!"

"I first learned about AMCSI and its annual conference in the summer 2013, but I was unable to attend. It was only a week before that I learned about it, so I started making plans for the following summer. To think that I had only seen one other person with AMC prior to turning 50 years old then to discover this organization. Life-changing to say the least. Now, I have connected with AMCers throughout the USA as well as with others in different countries. What a blessing that AMCSI has been to me. Meeting others. Sharing experiences and ideas. My times at the different conferences have been heartwarming, fulfilling, and humbling."

"AMCSI runs amazing conferences that help my daughter, who has AMC, connect with other individuals just like her. AMCSI has helped us not feel so alone on our journey with AMC. We have real "AMC Family" because of the work of this amazing nonprofit."

"My name is Dajha Smith and I just recently had my 21st birthday and I have had Arthrogryposis my whole life. I am currently a junior in college studying Child Psychology, Business Administration, with a minor in pre law, and I just graduated with my Associates in Child Development. With all of that I want to open up a boys and girls for handicap children and be a Child Psychologist for them. I am just here to say that you can do ANYTHING you put your mind to and if you have children with AMC please don't downgrade them let them know that they can reach for the stars just like a normal person. If they have something that they want to try please just let them even if they fail at least they can say they tried. I know its hard not to do things for them but you have to let them be independent and make mistakes. I was in band in high school, theater, hero society and more because I never let anyone tell me I can't do something. And the most important thing to remember is to ALWAYS KEEP GOD FIRST because at the end of the day he has the last say so."

"I never imagined how much this organization would change my life. My grandson has arthrogryposis and before he was born, we had never heard of it. We attended our very first conference when he was 4 months old and make a point of planning for it every year. I am now a lot more involved, but will never forget that very first year. Our AMC family has made a huge difference in our lives and the life of my grandson. I have made friendships that will last a lifetime and most important, my grandson knows he is not alone."

"My daughter has AMC. Her self esteem has improved because through this support group she has met peers and role models. I have also met other parents who have had similar experiences through this group. It has been a great support for me and also an opportunity for growth and learning via conferences."

"AMCSI makes it possible for people with Arthrogryposis and their families to see others that look just like them! Having the opportunity to see and interact with other AMC'ers is amazing! It's such a rare condition that you just don't see it very often."

"Seven years ago, I had never heard of arthrogryposis. My granddaughter was born with AMC and it changed our world. Without the support and understanding of AMC, our family would have been rocked to the core. This little baby has grown and has become a wonderful child that can adapt to almost any situation. She has gone thru numerous surgeries, castings, braces and splints. Each time we run into a bump in the road, AMC Support has gotten us thru the hard times. They keep us updated with new medical advances, therapies and hardware that our children need. The AMC Support Group is our family."

"I am the mother of a son with AMC. We knew very little about arthrogryposis when we adopted him at age 5, two years ago. This group stepped up to help us know so much more about this rare condition and connect us with others were already parenting kids with AMC. I find support from this group almost daily. We appreciate the work they do!"

"I am the grandmother of a AMCer. She is now 3 months old and because of this org we are a whole lot smarter and feel a lot more in control. When my grand daughter left the hospital no one had said the word "arthrogryposis" my daughter read it on her discharge papers a few days later. I truly do not know where we would be if not for all the people we have found thanks to this org, including other parents and Gracie's new Doctor Dr. Vb at shriners in Philly. They really have helped change our lives for the better and have given us hope for Gracie's future. Thank you. :)"

"This group has helped me more than anything with my sons condition! I had never heard the word Arthrogryposis before hearing it at an Ultrasound appointment while pregnant with my son. I was terrified and couldn't get much information from the doctor. I went online and this site was one of the first I found and I thank God for that! The families and their support, stories and possitive attitudes have forever changed my life! I don't know what condition my son would be in at this point without all of their wonderful advice and support! THANK YOU!!!!!!!"

"When we were 21 1/2 weeks pregnant with our son Roger, we found out through a "routine" sonogram that our baby had what was believed to be Arthrogryposis. The doctor knew very little and even the maternal fetal specialist had limited knowledge on the condition. We found this support group on-line when a friend searched the term "AMC" and "blessed" and we came across the founder's web page about her daughter Abby and then the group web page. From that moment on, I memorized all the stories and information I could absorb and found hope, faith and a feeling of peace that everything was going to be all right. We have relied heavily on the information and support found within this group of AMAZING people and don't know how well we would be doing without them! Roger is almost three and doing just great! They are so informative by means of sharing every, and I mean EVERY aspect of what can be expected. We are truly indebted to Ani, Theresa, Tracey and Peg, just to name a very few."

"A few months ago my wife and I were surprised to find out we were pregnant with our 9th child (4th biological - we have 5 adopted). All of our biological children have been healthy, so the news of Declan having Arthrogryposis seemed overwhelming. We knew that termination was never an option, but resources on AMC seemed lacking. AMC Support has helped provide a wealth of tips, knowledge and advice to our family. We are very thankful for this agency and recommend it to anyone looking for resources on AMC."

"We knew our daughter would have problems before she was born since she did not move in womb and they could not see the base of her spine on ultrasound. After birth and three weeks of test we were told she had Arthrogryposis, not that we'd heard of it before or knew anything about it. Jump ahead 10 years and we stumble upon the AMC Support, Inc. website and annual conference information. We attended our first conference this year, it was eye and heart opening! We found out so many tips, tricks, ideas, inventions, and FRIENDS and SUPPORT. Our daughter discovered she was "not unusual" after meeting and playing with kids of all ages. AMC Support, Inc. is making it possible for parents like me to discover and share all the various aspects of living with a AMC person. Thank You AMC Support, Inc!"

"Truthfully I am not only just a volunteer but a client served as well. I started out as a client served and continue as one but also I volunteer in moderating the chat that we hold every week online. The people I have met through this support group, AMCSI, have become my family. Without them I wouldn't be able to ask questions from the people who have been there and done that and I couldn't bond with the mothers and fathers who are going through it now or will be going through it soon. We are a family, we are friends. Two years I spent alone (besides my family) doing my best to flounder through therapies and surgeries and AMCSI offered up their memebers to help us through the hard times and find people who would share our small triumphs."

"My son's condition was unknown to us so we were surprised at his birth about all the differences he had. When we found out that it was Arthrogryposis we started looking into things. I had even did a search trying to find support groups. I came up empty handed, but then a little before he had turned 2 yrs old I decided to look again and this time I must have put the right wording in because up came AMCSI. I had never felt more relieved in my life.. For almost 2 yrs I felt alone and then there it was my light to guide me through the tunnel. Everyone has been so wonderful and accepting and helpful. Having others who understand you is quite a wonderful feeling and I'm glad that I found AMCSI in that search."

"My 3 year old son has Arthrogryposis, and this support group has been wonderful for our family. We have attended two conventions where we were able to meet with hundreds of other families with members who also have AMC. This condition is very rare, so it is vitally important to be as educated and supported as possible - and we have learned to much and have so much comfort in knowing we are a part of this support group and are connected to all the other families."

"When my son was diagnosed with AMC I immediately searched online to find some answers about why this happened and what I needed to do next. I came across amcsupport.org and was quickly greeted by others and welcomed onto the forums. I found answers to many questions and loads of support from others dealing with the same things. I was able to go to a convention and meet people of all ages affected by AMC. It was incredible! It was then that I knew my son was going to be ok."

"This organization has been my saving grace. Last summer, I became the mother of a child with a mild case of AMC. Through this support group, I have had my hope renewed, and many, many questions answered. This group has shown me that children with AMC can thrive, and become well adjusted adults living close to "normal" lives. It has shown me that people with AMC don't have a disability, they have a "diff-ability". AMC'ers can do just about everything a 'typical' person does... they just may do it differently!"

"As a 55 yr. old with AMC who had no contact with other AMC'ers until I was in my late 20's and only for one day. I was overjoyed to have discovered this ORG. It has enabled me to meet hundreds of AMC'ers virtually across the world. I'll be attending my first conference next month and will be meeting many more. The stories shared by these adults and parents of young children, and their kids, have been an incredible inspiration to me. They help me to see how far I have come in my journey with AMC and in turn enable me to light the way for them on the earliest steps on theirs. None of this would have been possible without this amazing ORG. I hope one day there will be no need for such an ORG. Until then, I hope it grows exponentially to envelope many many more in the support, knowledge and inspiration I have come to know and love through their heartfelt mission."

"This support group is my extended family for my daughter. I do not know what I would do without the support and guidance we receive from them. They are our large extended family from around the world. AMC is not very known not only to special needs families, but unfortunately also many physicians. It is vital that we spread the word and raise awareness about AMC so that a family may be able to improve the quality of life their child may be living."

"AMC Support Inc is the most wonderful thing to happen to our family and our diff-abled son. We wouldn't be where we are today without them. The information that is shared, the shoulders to lean on, the encouragement, I don't know what we'd do without them. The yearly conferences are amazing. It's so wonderful to meet so many people that are "just like us". Other children for my son to meet that are just like him, other parents who are going through the same thing. It's always a good time. Truely, we would not be where we are today with them. THANK YOU AMCSI! From the bottom of my heart, I can't say thank you enough for all you do!"

"In 2005 I came in contact with Ani, little Abby's Mom.(Abby is the child that inspired amcsupport.org) Through emails and phone calls, I heard Ani talk about her "dream"... A Non Profit Support Organization for families affected by arthrogryposis. At the first Arthrogrposis Conference in Chicago IL2006, I was able to meet Ani, Abby and many other families. Right then and there I saw the need for Ani's DREAM... So I went home, teamed up with a few others and worked many hours to make her dream come true! In 2007 we became an official Non Profit organization! (501(c) (3) Through the past few years, I have meet many families from around the world. We have laughed, cried and shared our lives together. I can never explain excatly what my "AMC Family" means to me and how honored I am to have served as Vice President and now President of this great Organization!"

"When my son was born, my family felt completely alone, even many medical professionals had not heard of the rare neuromuscular condition arthrogryposis multiplex congenita. I found the group through a friend when my son was almost 5. It changed our lives. The group has done so much not only for my family,but also for may other framiles across the country and around the world. I have been honored to serve as the Vice President of the Board of Directors, and have recently begun serving as program chair. I volunteer many hours each week to assure that NO other family with a loved one with arthrogryposis feels isolated and alone."

"I don't even know where to start! AMCSI owns a major part of my heart! My daughter Bailey was born with AMC August 21st 2008, we were un-aware of any complications before birth so when she was born with AMC my Husband and I were very shocked and scared. Doctors were telling us of the thing's she wouldn't be able to do, the affects, the therapies and doctors she would need to see.. etc. It was a very overwhelming expierence and we were very frightened. We found AMCSI through an internet search when Bailey was a few months old and it was the BEST link I could have ever clicked on in my entire life. They took my family in like their own, offered support and most of all friendship. They made us realize that it was not about what Bailey wouldn't be able to do but about what she WOULD be able to do! They squashed our fears and opened our hearts! I couldn't ask for a better organization to be apart of! I'm so blessed to know many warm-hearted people through this support group and I am thankful everyday for them!"

"In January of 2009 I found out my baby had a congenital anomaly. I was given a few possible diagnoses. The day she was born we were given a definitive answer. My daughter had Arthrogryposis Multiplex Congenita. I was so confused and was looking for support. I found amcsupport.org. through an online search engine. Then I found the forums. I asked questions and received an instant answer from Tracey one of the board members. I have learned so much in the past two years. last year we even went to the 5th AMC convention. I had NEVER met anyone with AMC in person. I was so excited to see what they had to offer. I was able to attend workshops for me and workshops to learn about my daughter's AMC. I must say meeting adult AMC'ers as we call them was priceless. I cannot imagine my life without the AMCSI. If I have a question I know I can go to the forums and get an answer. They have many links that help us find resources in our area. I hope amcsupport.org and AMCSI is around forever. Two years ago I was alone. Now I have been embraced by a wonderful support group. Thank You AMCSI"

"AMC gave us HOPE when we were lost and had NO answers.....we absolutely LOVE them and we are CHANGED forever because of them.....you can read more about our story at http://graceemma.blogspot.com/ They have given us so much, now its time to give back!" ~ Erica P. Volunteer 04/18/2011 "I have watched AMCSI grow into a non profit over the years from the small informal group it started as. It began as a support group with online forums and has grown immensely over the years providing outreach to new families receiving the diagnosis, parents of children with AMC, and to adults with AMC from various parts of the globe. AMCSI provides a wonderful way to connect with others whether you are a new expecting parent, parent to a child with AMC, or an adult looking to connect with others that understand where you have been or what you are going through. Our "family" connects through the free online support forums and through the annual conference which is a wonderful time to network and learn about current treatment options, make new friends, meet old ones, and to receive support. I am very proud to be a part of this growing organization as it continues to bring support to AMCers, educate the public and medical field, and bring awareness to the public of what arthrogryposis multiplex congenita is."

"My daughter was diagnosed with AMC several months before she was born. We had never heard of her condition and couldn't even pronounce it. Because of the volunteers at AMCSupport.org, we changed from two terrified (and emotionally devastated) parents-to-be to educated and prepared parents. These complete strangers called us "Family" and patiently prepared us to be great parents to our sweet girl. If it weren't for this group of people, we would have settled for inferior treatment, thinking it was our only option. This is the greatest non profit in the world and it is made up of the best people in the world. I love AMCSupport.org and I love all the people that make it what it is."

"Best organization ever. Period. I won't be the only glowing testimonial so I'll keep it short. This organization has helped encourage and support me through the worst trials of my new life with a very special daughter. There were times I was at my worst and a word from a member put me to rights. I would not be as confident or happy today without them. My daughter stood for the first time after a surgery suggested to me by a board member. We were told she never would. Then after several ideas about physical therapy were shared she started self-feeding and using her arms more. Love this group!"

Testimonials & Feel-Good Stories

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