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Saturday, 26 May 2012

Apert Syndrome


 Apert Syndrome is a genetic defect and falls under the broad classification of craniofacial/limb anomalies. It can be inherited from a parent who has Apert, or may be a fresh mutation. It occurs in approximately 1 in 160,000 to 200,000 live births. Apert syndrome is primarily characterized by specific malformations of the skull, midface, hands, and feet. The skull is prematurely fused and unable to grow normally; the midface (that area of the face from the middle of the eye socket to the upper jaw) appears retruded or sunken; and the fingers and toes are fused together in varying degrees. To learn more about this syndrome, you can go here.

Reeces Rainbow have a few kids listed that have Apert syndrome.
These kids are typically normal cognitively developed. Their most special need is for a family.

Meet:





















Charlottes mom met Kacey, and has written some very  touching posts about her over at her blog. To read them, go here and here.


Quite a few RR families have adopted children with Apert syndrome. Could you be the right family for one of these beautiful children?







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Friday, 25 May 2012

Achondroplasia




Achondroplasia is a genetic disorder of bone growth that is evident at birth.  Affected individuals have arms and legs that are very short, while the torso is nearly normal size. Achondroplasia is the most common form of dwarfism. Reeces Rainbow have three little kids listed with this diagnosis.

The word achondroplasia is Greek and means "without cartilage formation," although individuals with achondroplasia do have cartilage. During fetal development and childhood, cartilage normally develops into bone, except in a few places, such as the nose and ears. In individuals with achondroplasia, something goes wrong during this process, especially in the long bones (such as those of the upper arms and thighs). The rate at which cartilage cells in the growth plates of the long bones turn into bone is slow, leading to short bones and reduced height. Individuals with achondroplasia usually have normal intelligence and a normal life span.

There is a strong supporting community for people with dwarfism; Little people of America.

This is Oliver.



He was born in March 2007, which makes him five years old. Sadly, most of those five years have been spent laying in a crib.He looks so very sad, my heart just breaks for him. Oliver is facing transfer to the institution VERY SOON, and will remain bedridden the rest of his life if he is not adopted. He does have a grant of $3500  towards the cost of his adoption. He really needs a family to give him the chance to live and blossom.

And this is Lauren.



Isn't she just a doll? Can you imagine  her running and playing with long hair and a pretty dress? Going to school, meet friends and learn? All that is possible, but for that to happen, she needs a family that will come for her, adopt her, believe in her an love her. She is in an institution, that used to be really bad, but tanks to organizations like Life 2 orphans, the conditions have improved some.A family that is there adopting right now, says that they see smiling and happy children. This of course is fantastic, but still a family would be a miracle for Lauren. In the country she lives, people with a disability like hers, are seen as a shame to the family :-(

Lauren was born  January  2002, and is 10 years old. Look at her beautiful smile, I bet she would smile even bigger if she found a family.This is her profile.She only ha $50 in her grant, so even if you are not in a position to adopt her, would you be willing to donate to her grant? And please spread the word about this little beauty.

And just recently little Temperance was listed.


She is in a different country than Oliver and Lauren. She is in a really good place right now, but that will all change as soon as she turns four. Most probably, she will be transferred to a mental institution. Please consider if  she could be part of your family? She is not yet one year old, and could lead a full and happy life if she was adopted.

Zeke and Moses also have different forms of dwarfism. Little people of America  offers lots of ideas on how to finanace an adoption, and they also offers grants to families adopting children with dwarfism. To learn more about this, go here.


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Monday, 21 May 2012

A scary profile?


This little girl is Haven. 


Her profile might scare off some people. She seems to have a host of medical challenges. But when they all are broken down to what they really are, they are all quite manageable.

This is her profile, with my notes added in red:


Girl, Born March 2006( This makes her six years old.)

 Poor Haven……sweet little girl.   Such a pretty girl burdened with such medical and cognitive difficulties….and no mama to love her through them.

From her medical records: 

celiac disease, 
My bio son has coeliac disease and it is so very manageable. I always use to say that if you have to have a chronic disease, pick coeliac. It is completely treated with a glutenfree diet, and my son is one of the most healthy kids I know of. He was really sick before we found out about his diagnoses though. It didn't take us long to get used to the diet, and know it is an issue we seldom think about. If anything, his diagnosis makes us a little more conscious and healthy in choosing food.

CP,
About her CP diagnosis, it makes me very hopeful that she is standing upright in her photo. This means that she most propbably doesn't have the more severe forms of CP

 toxic Hepatitis, 

Toxic hepatitis is an inflammation of your liver in reaction to certain substances to which you're exposed. Toxic hepatitis can be caused by alcohol, chemicals, drugs or supplements. 
In some cases, toxic hepatitis develops within hours or days of exposure to a toxin. In other cases, it may take months of regular use before signs and symptoms of toxic hepatitis appear. 
The symptoms of toxic hepatitis often go away when exposure to the toxin stops. But toxic hepatitis can permanently damage your liver, leading to irreversible scarring of liver tissue (cirrhosis) and in some cases to liver failure.

This can be controlled and medicated at home.


hypotrophy of III stage
The clinical signs of hypotrophy are the decrease of subcutaneous fat on abdomen (at the 1st stage), on extremities (at the 2nd stage), on the face (at the 3rd stage). At the 3rd stage of hypotrophy, the child's face looks like the face of Old man ("Volter's face"). Besides this, the decrease of skin elasticity, turgur and body length, delay of neuropsychological development and weakness of immune system take place. Most children coming home from orphanages have some degree of this, but it is treated with getting enough and healthy food.


From our team who visited there: Haven is afraid of strangers and would not interact with us.
This is what made me notice Haven among all the children needing families. Her scared expression.  I hope she finds a family before she has to be transferred to an institution where everyone are strangers to her. Where she doesn't know anybody. How scared will that make her?

So please help Haven find a family. If you are not them, then spread the word about her, use facebook, twitter, yahoogroups, talk to people about her. Haven needs a safe and loving environment. She needs a chance to feel safe.


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