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.

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!

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. 


Abrehem
 
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!

Sunday, June 30, 2013

Meet our focus for July: James!

 
James needs a family! He already walks, smiles, plays, poses for pictures and is a super smart bundle of joy!
 
 
James is not in an institution and is instead in a foster home! In fact everything about New Hope Foundation is amazing! We've seen kids in institutions in China come home in rough shape. But here they are healthy--socially, emotionally and physically.
 
To quote their website, they aim to...
 
  • To take physically handicapped babies under six months old and provide them with a caring and secure environment;
  • To provide long-term care in as close to a normal home environment as possible;
  • To seek out the very best medical solution for their handicap and facilitate their treatment;
  • To work very closely with the local Children’s Welfare Institutes to give these children the very best opportunities for the future and also raising the awareness of the needs of these abandoned children in China;
  • To employ and train local staff, as well as working closely with local community to help support their needs;
  • To provide an opportunity for volunteers to get be involved with the care of these children;
  • To provide training and support for prospective foster parents in conjunction with the local Children’s Welfare Institutes; and
  • To keep accurate records of the children’s development so that they have a “history”.       

  • I can't tell you what that will do for his brain development and transfer to a new family! Wonders!


     
    For more information on James (and more pictures) please click here.
     
    PLEASE SHARE JAMES' PICTURE ALL OVER!!!
     
    SHARE THIS PAGE!
     
    SHARE NEW HOPE'S PAGE!
     
    SHARE SHARE SHARE!
     
    You can make such a difference! We know three families now who have found their AMCers from someone sharing on Facebook alone!
     
    And once again we have no way to donate your monthly $12 to this child's adoption fund, but you can continue to make donations to the few families who are in the late stages of adopting their AMCers and who are desperate for help:
     
    The Blackmon family needs a few thousand. They met their children last month and are waiting to finalize their adoptions.
     
    The Schmitt family also need a few thousand. They have also already met their children and are waiting for their final trip.
     
    Caius' family (the Robinsons) have committed to another child (another double adoption!) and are a few thousand short as well. They are finishing up their dossier and are almost done with all the adoption paperwork. The way things are going they may finish their adoptions and take home their children around the same time as the Blackmon and Schmitt families even though they have not met their children yet!
     
    Also if you wish to donate towards New Hope Foundation to help kids like James, go here.
     
    Thanks!