Orphans with Arthrogryposis

There are kids with Arthrogryposis all over the world who wait for a family to call their own. Every child should have a Mama and Papa to love them. Sadly many kids will never know the love of a family as they will live out their shortened lives in institutions. The children posted here are from Reecesrainbow.com If you can't adopt, you can donate to their grants on reecesrainbow.com Don't leave them to die in institutions.

Monday, June 2, 2014


Meet Ivey!
Born in 2001.

From a mom who met her:  I have met her! We became very close during my trip and she asked me to take her to America to get her arms and legs fixed. She is so sassy! An absolute delight.
From another mom who met her:  I adore Ivey with every fiber of my being. She is so sassy, smart, and funny, and she deserves to have a family of her own! When I met her in June she was 11 and has just finished fourth grade - or the equivalent of fourth grade, at least. Her favorite subjects are math and reading, and she can recite long, complicated poems and songs from memory! Mentally, she is just like every other preteen. She invited me to watch tv with her, and was able to catch me up on all the plot lines of her favorite series very quickly. Ivey is also a sass master, and loves hanging out with the older kids.
Physically, Ivey is very limited. She cannot move her arms and legs at all and her hands are very twisted. Her legs are very tiny and underdeveloped. I believe she has lordosis and scoliosis in her spine, and her back is unnaturally arched. Yet she wants to be independent so badly. When we were painting nails and making bracelets she wanted to do those things by herself, but couldn't. When she learned that surgery in America could help fix her arms and legs, she asked me to take her in a suitcase to America so she could 'get fixed'.
Someone please look past her physical limitation! Ivey would make an amazing daughter and sister. I want to be able fulfill that promise I made to her during that summer - so somebody, anybody, please give her a chance!

"Please see if you can find me a family."

And a third person who met her: She is SO smart and funny and has the best sense of humor. When we were in there, she asked the staff if it was possible to get a family for herself, but they felt the answer would be no- because no one would want someone as badly disabled as she was. She can do nothing for herself physically, her limbs are twisted very badly, and unlike many of the others, she cannot feed herself. She lies on the couch and another older girl, also disabled, comes and feeds her. But she is amazing- despite her lack of formal schooling, she has memorized poems, and such. But she is also a fantastic conversationalist. She reads, can write some (limitations of her arms), has an incredible memory and method of delivery of things she has memorized (she also sang for us). She loves the color yellow and loves dressing up to feel pretty. She also loves to watch cartoons, but is ok with “serious dramas” on tv too lol!

No one would want someone as badly disabled as she

She’s spending her days on a couch, wishing for a family she fears will never come because her limbs are twisted and she cannot be “useful.” I am praying with all my heart that there is a family out there that recognizes that a person’s worth is not measured by what they can physically do- and will cross the ocean to call her daughter, because I truly believe she would be an incredible addition to a family. She’s spunky and overcame her hesitation about potential rejection, in order to ask me if I would please see if I could find her a family.

She apologized and said she knew she would not be 

much help to a family. 

I quickly explained that we Americans don't

 adopt kids to have servants.

I met her and I LOVE her!!!! Of all the kids I have ever met, THIS is the one I want to see in a family most urgently!!!!! 

She is amazing- she was a "big sister" of sorts to our [little one] and she is intelligent (very!) and sweet and compassionate, extremely helpful and respectful. I seriously have NOTHING negative to say about this girl. Not one thing. 

Heartbreaking truth: The day I met all the kids in the orphanage, and was taking pics to update the RR listings of the ones I recognized, she told the translator she wished she wasn't so old and "ugly" so that she too could have a family. The translator (a young woman from the village) told me what was said and agreed, it's a shame that she's so old and cannot be adopted. I asked how old she was, and she told me and I quickly asked the staff if she was available for int'l adoption. They looked it up and said yes, she was. 

She listened to all of it, biting her lip.

She listened to all of it, biting her lip. I could see this spark of hope in her eyes, but she was obviously fighting it back. I asked the director if it was ok to interview her, to see if I could find her a family and she nodded but told me she knew it would be very hard because of her age and severe disability. She cannot do any self care. She lays on a couch most of the day, and is spoon fed by another orphan who has more mobility. She apologized (the young girl) and said she knew she would not be much help to a family. I quickly explained that we Americans don't adopt kids to have servants, we adopt them because we love having families. She smiled and went back to being her usual happy self. 

I have video of her reciting a very long complicated poem. She is amazing- and delightful to spend time with. I went to take her picture, and she asked them to get her up in the wheelchair, so she looked "better for the family to see." 

We have GOT to find her a family- she is totally awesome!!!!

She wants to be able to feed herself and to paint nails by herself. When I was there she was trying so very hard to paint my nails by herself.

We HAVE to find her a family. Seriously. She's just amazing. And cognitively, to be 12 and to believe that you will NEVER be loved in a family because you were born with arthrogryposis, and because you aren't one of the "pretty ones" is just devastating to me. If it were me, I think I would be a total depressed mess. But she isn't. That's the thing that drew me to her- she's upbeat, optimistic, friendly, full of smiles, so helpful.

 As far as her AMC goes, everything Ivey has mentioned a desire to do is completely possible with therapy and surgery and even now with adaptive equipment.

Please if you have any interest in Ivey or any questions about either her, her situation, the country she's in (that starts with a U) inquire directly here.

Leave any questions about AMC in the comments below and we'd be happy to answer them!

And please share this girl far and wide! We don't want her negative thoughts about herself to become real! She DOES absolutely deserve a family! She is beautiful! And a couple of us have an "Ivey" at home who have the same joint issues and spine and even ear! (Long hair covers it!) We'd be happy to help! Both our daughters walk and feed themselves and write and go to school and play on the computer, etc. etc. etc. etc. etc.

Thursday, February 20, 2014

Aubree update--she wants a family and little brothers and sisters!

Aubree with Serge, an adoption facilitator
Aubree would really like a family please. She asks about it all the time.

As many of you know we've blogged about Aubree before.

She was our focus for the month of September (link here).
A father adopting his daughter out of the same orphanage wrote about her here.
A young gal on a missions trip to her orphanage as well as a mom adopting from that same orphanage both wrote about her here.

Aubree is running out of time to find a family. A friend is in her orphanage right now adopting a different child(ren). Here's what she had to say:

"The good news is the orphanage [...] is very accommodating and pro-adoption, so we already met a BUNCH of kids

Aubree was one of the first ones I met. I'll be honest, I've read her profile, and I was worried. She's in the pictures we had of M in the new orphanage, and to think that she was the type of child described in the second "someone met her" description, was scary! I don't know what brought about the difference yesterday (maybe they're working with her, or she was just having a bad day before?), but she hung out with us for a while, and we didn't see any of those behaviors. I hope we get to spend more time with her next time as well, and I think we will.  AB [name of three year old withheld] loved her- she was very gentle and nurturing with AB and J [little kids] and very social! We talked for a while, with a nanny and Serge translating for us (although I actually understood quite a bit, because I asked questions that I could recognize the answers to!). She likes school very much, especially art, and writing and drawing. She likes animals (cats, dogs, etc). She LOVES jewelry, and hairbows (the more giant the better!). She very much wants brothers and sisters, and when i asked her if she wanted older ones or little ones, she said little (and I believe it, she was very interested in our five kiddos, and loved to snuggle them). She held AB and AB walked her through our photo book, describing everything- Aubree was so attentive, and her face looked so wistful.

So, physical description of Aubree: Obvious arthrogryposis, although, she seems to have some flexibility in her hands, because she was holding a banana (no peel) and eating sections of it by herself. her legs are pretty small, and very stiff. She struggles with speech, not with the thoughts, but with getting it out, and I believe she would benefit from speech therapy. She was very polite and affectionate as well, and although she does have some obvious cognitive delays, she seems eager to learn new things and to be a part of things.

When she was with us, I had our five playing blocks on one of the beds, and although she watched, and looked very interested in what they were playing, she never attempted to roll over there or monopolize attention. She talked with her friends, with our facilitator, and with me, for a while, especially when she realized that I might know a family for her- which totally broke my heart, because she was so eager to be adopted. At one point, I had turned away to say something to someone else, and she was trying to get my attention- her arms do appear to be affected by the arthrogryposis from what I saw, because her elbows didn't bend much, and her hands are turned at an unusual angle, and she grabbed at my shirt sleeve, trying to get my attention (she didn't know my name then). Her hands are strong, from rolling the wheelchair, and her grasp is poor because of the arthrogryposis, so she had to kind of sling her arm and try to close her fingers on my sleeve. I could see the awkwardness of it for her, but she definitely wasn't afraid to try! She's beautiful in person- these pictures don't do her justice at all. And I'm sorry my pictures are blurry, kids don't stay still long and I was using my camera with a slower capture speed because the room was a bit dim.

And something to consider- it is a very cheap area to stay in, and not far from Kyiv, so with Aubree's $3092 grant plus the private $3K grant, you'd be probably close to 1/3 of the way to funded just from that. 

Here's a few pictures of Aubree...again, sorry for the blurriness, but there were about 18 people in a six bed groupa "bedroom" and 5 of them were my kids under 7 that I was trying to supervise while I socialized lol"

Monday, November 11, 2013

Kambry pictures!


Update on Kambry
We have a video of Kambry showing her playing and speaking with her sweet little voice! And with all these pictures it is safe to say that her body works well! Besides what looks like clubfeet and possible curved fingers on the right hand, her contractures don't seem to affect her much at all! (She makes it to AMC status barely, with at least three contractures in at least two areas of the body--clubfeet and fingers on one hand.) Just watching her wave bye-bye in the video or hold her baby doll shows she has excellent muscle control and function. She has plenty of muscle for an AMCer! And she is wonderfully cheerful!
She has Freeman Sheldon syndrome (or whistling face syndrome), a rare type of AMC, but besides the clear facial markers, the rest of her body is relatively typical. At least what we can tell!
This is a very good prognosis!
Let's help her get a family!


Sunday, November 3, 2013

Our focus for November: Kambry!

Meet Kambry!
There are over 400 types of arthrogryposis and Kambry has one rare type called Freeman Sheldon Syndrome.
(Dr. Hall says, "You must remember that arthrogryposis is a symptom, not a diagnosis. There are over 400 diagnoses that can cause AMC." So when you know the diagnosis you can treat effectively!)
To quote the arthrogryposis atlas:
"Freeman Sheldon Syndrome:
This is also called cranio-carpo-tarsal dysplasia, or whistling face syndrome. It
is a rare, autosomal dominant disorder with classic facial features of a pursed
mouth, deep-set eyes, and a small nose. Intelligence is normal. The infant is
often seen because of foot and hand deformities, including flexed, ulnar
deviation of fingers, clubfeet, or vertical tali. There may also be dislocated
hips and scoliosis and small stature."
Kambry is doing really well. She's up and about and it looks like she's walking on her clubfeet, although it mentions she has had them surgically corrected and maybe that's not evidenced by the picture. It looks like she would need ankle braces known as AFOs or possible future casting to straighten them out more. But overall I would not expect Kambry to need as many surgeries as the more common types of AMC. She has good-looking muscles (a coveted attribute in the AMC community) and based on the position of her upper body, it doesn't appear that her shoulders, elbows or hands are affected at all. It's hard to tell from this picture, but it doesn't seem that her hips are affected either.

One of the biggest things to remember about Freeman Sheldon syndrome is that it has very specific and easy-to-diagnose facial characteristics (aka the whistling face). But these are often confused with fetal alcohol syndrome to those unfamiliar with the specific characteristics of both conditions. This has scared some potential parents away, as many are told that fetal alcohol syndrome comes with "distinct facial characteristics." From her picture, all of Kambry's facial characteristics are purely due to her AMC type. Freeman Sheldon syndrome does not have intellectual disabilities or behavioral issues associated with it.

If you are interested in Kambry you can contact Reece's Rainbow by going here.

Monday, September 30, 2013

Our focus for October: Shawn!

Meet Shawn!
Shawn is just a well-adjusted, amazing little boy who is highly functional and mobile! He has all-limb Hall's contractures (arthrogryposis multiplex congenita). He is receiving an education, has a foster family inside the orphanage giving him much needed one-on-one time and he is social and outgoing. Because we can't say it better we're just going to quote the family who has met him outright:
"Shawn just turned 5 this summer and his special need is post-operative congenital Arthrogryposis.   He is a very sweet and very capable little boy who can walk, sit, raise his arm to grab a toy above his head and bend over to pick things up.  I also observed him reaching over to pull on a little friends ear!!!  I honestly didn't think I would have a favorite when I went to China but this little guy stole my heart within minutes...so much so that I asked to see him again before I left on our last day...  If I could've smuggled one child home with me...well it would've been him!

Shawn lives with a foster family in an apartment within the orphanage.  He is receiving his education through Half The Sky's Little Sister program and is described as an optimistic and active child.  He likes to listen to stories read by the teacher and has good language skills.  He understands instructions quickly and expresses his thoughts well.  Sometimes he thinks and explores difficult questions as if he is a "little teacher."  Shawn performs well in class, shares well and likes to play games with other children.  "He likes to play with the bowling ball and electronic piano.  He enjoys coloring and likes to dance with the help of the teacher. He is kind and will comfort others when they are sad."

Go here to find a video of Shawn!
Please email JCandRebecca@Yahoo.com for more info!

Sunday, September 1, 2013

Meet our focus for September: Tavin!

Meet Tavin!
Tavin is 21 months old and a doll!
Several people have already discovered Tavin on the Reece's Rainbow website and asked about him!
No commitments yet though!
Tavin appears to have joint contractures in his left leg. It's hard to tell if anything is affected in his upper body since his wrists look so good and all limbs are pretty straight!
For those of you familiar with arthrogryposis, we're talking easy medical stuff.
Easy transition since he's young.
Adorable kid.
It wouldn't be surprising if he had a family before this month is up.

Thursday, August 1, 2013

Meet our focus for August: Danika!

Originally we were going to write about Danika last year, but Russ*a put the ban on US adoptions and that stayed our hand. But since one of our Bring Hope members lives in the UK and we know the UK as well as Canada may still adopt this girl then that leaves some hope she'll be adopted.
But she must be adopted with her little brother who has no special needs. 

We've been using "Danika" and "Abrehem" to refer to these children, but we have no idea what their actual names are. Any adopting family can change their names anyway. All we know is that they are in Russ*a, and they cannot be adopted by Americans even though they are available for adoption and desperate for adoption.

Danika was born in April 2008. She has brown eyes and dark brown hair, although based on her picture I would call it light brown hair. She is said to have astigmatism and Hall's contractures (arthrogryposis). She is described as "communicative and friendly."

Abrehem was born a year later (April 2009). He has gray eyes and a calm nature.

Would you share this post with any Canadian or UK friends who are considering adoption?

They were listed as being in "Region 13." Even though they are no longer being actively advocated for on Reece's Rainbow, their profile is still there and that's where to get a bit more information on how to continue with the process. Go here for their profile.

Obviously their chances of being adopted together and under the US ban are low. But sharing about them can bring them hope!

***Since the US-based organizations cannot be involved, there's no way to accept money towards these children's adoption. So if you have your $12 donations ready and want to support a family adopting an AMC child, please go here to support the Schmitt family who are $5,000 short and pick up their two sons (one with CP and one with AMC) in about 8 weeks. Thanks!