Hands on a Miracle: www...What a Wonderful World Wide Web

Thursday, November 6, 2008

www...What a Wonderful World Wide Web

I can't believe how this circle has grown. It is overwhelming to me at times. What started as a few of us Mom's and Grandmothers needing an easy way to communicate with each other has turned into a a worldwide network of support that simply did not exist before.

I have to give Tonya a huge shout out as she pretty much single handedly started this whole thing. And to POLP as well, as that is how I found Tonya in the beginning.

I feel so fortunate that Bryan will have this network of support already established for him, and that he has come into the world in a day and age where acceptance is "what is normal".

What a wonderful world.

6 comments:

Alex said...: We ARE very fortunate to have each other, I love my "blogging family"!!; November 7, 2008 at 11:05 AM
Caden and Mommy said...: Candi!
You are correct, we are so fortunate to have the web! Seriously, I would have not made it this last week if it wasnt for the Internet. We are waiting to check out of the hospital - yeah, we get to go home. And boy does Caden need a bath :0)
Trisha; November 8, 2008 at 2:49 PM
Jennifer said...: That picture is precious! Those eyes! The blog thing is pretty amazing isn't it?; November 8, 2008 at 3:25 PM
Kim said...: I love our blog world. I feel such a bond with all of you because we all "get it." We can say something and we all just know. We have been there or if we have not, we understand what you are going through. Thank God for you all!; November 8, 2008 at 7:58 PM
Jillsblog said...: I love our blogging family as well. It is nice to "know" so many people and their very adorable children...I look forward to a time when we can all meet together in person.; November 9, 2008 at 4:56 PM
Leong Family's said...: Candi, it's definitely a wonderful WWW. If not,I wouldn't find out there are actually lotsa great mommies and great blogs out there :); November 17, 2008 at 12:59 AM

Support for New Parents

If you have come across my site because you are a new parent of a child diagnosed with dwarfism, I encourage you to check out Tonya's site - "What is Normal?". I cannot say enough about the great work she does educating and supporting parents of children with dwarfism. "What is Normal?" is full of great information on dwarfism of all types and if the information is out there Tonya more than likely has a link to it. She is a wonderful advocate for our children so please don't forget to thank her if you find something useful on her site.

Achondroplasia

Achondroplasia is a common, nonlethal form of skeletal dysplasia (dysplasia - not normal), or a genetic disorder of bone growth. Depending on who you ask, statistics say that one in 25,000 to one in 60,000 births will result in Achondroplasia. Achondroplasia is one of the oldest recorded birth defects, dating back to the Roman Empire. It is characterized by abnormal body proportions — affected individuals have arms and legs that are very short, while the torso is more nearly normal size, and in some cases individuals have larger heads due to "frontal bossing".Before beginning to walk, a baby with achondroplasia often develops a small hump (kyphosis) on his lower back. This is due to poor muscle tone, and usually goes away after the child starts walking. Once walking, the child usually develops a markedly curved lower spine (lordosis or sway- back), and the lower legs often become bowed. The feet are generally short, broad and flat.Achondroplasia is caused by an abnormal gene located on one of the chromosome 4 pair (humans have 23 pairs of chromosomes).

In some cases, a child inherits achondroplasia from a parent who also has the condition. If one parent has the condition and the other does not, there is a 50 percent chance that their child will be affected. If both parents have achondroplasia, there is a 50 percent chance that the child will inherit the condition, a 25 percent chance that the child will not have it, and a 25 percent chance that the child will inherit one abnormal gene from each parent and have severe skeletal abnormalities that lead to early death. A child who does not inherit the gene will be completely free of the condition, and cannot pass it on to his or her own children. In more than 80 percent of cases, however, achondroplasia is not inherited but results from a new mutation (change) that occurred in the egg or sperm cell that formed the embryo. The parents of children with achondroplasia resulting from new mutations are usually normal-sized.

The gene that causes Achondroplasia was only discovered in 1994, a mere 13 years ago, so much research is still being done to learn more about it. The gene is one of a family of genes that makes proteins called fibroblast growth factor receptors. Scientists have recently linked these genes with several skeletal disorders. While scientists are eagerly studying these mutations, there is much controversy from society at the outcome of the studies. Since the discovery, many couples have chosen to terminate pregnancies because of this.

A few notes: Intelligence is entirely normal in people with achondroplasia. The term "midget" is considered offensive in this day and age. The acceptable terms for a person with any type of dwarfism are person with dwarfism, little person, LP, and person of short stature, or simply by their name, as you would address anyone else. If you would like to know more: http://www.lpaonline.org/mc/page.do

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Thursday, November 6, 2008

www...What a Wonderful World Wide Web

6 comments:

Support for New Parents

Achondroplasia