Kartangener Syndrome

Several people have asked us lately to explain what A.J.’s “special need” is, so I thought I would post the answer here.

The reports that we have received about A.J. do not specifically say that he has Kartagener Syndrome, but they do report that he has situs inversus and that he has a history of very frequent respiratory infections. Because testing for this type of very rare disorder is not available in his country, an “official” diagnosis has never been made, but based on his medical history we are fairly sure this is what he suffers from.

The combination of situs inversus, chronic sinusitis and bronchiectasis was first described in 1904. Manes Kartagener described the syndrome in detail in 1933, and it bears his name. KS is estimated to occur in 1 in 32,000 births. Kartagener Syndrome is a combination of two different problems – situs inversus (reversal of the organs, for example the heart is on the right side of the body rather than the left) and primary ciliary dyskinesia (dyskinesia = abnormal movement).

Cilia are small, hair like projections that occur in the lungs, respiratory tract, reproductive system and in the ventricles of the brain. These cilia continually move to “sweep” bacteria, viruses, and foreign debris such as dust and smoke out of the respiratory tract. When they do not function properly it causes frequent problems such as pneumonia, ear infections, and sinus infections. Because cilia also have important functions in the reproductive system and brain people with KS may also be infertile and suffer from frequent headaches.

Kartagener syndrome is recognized by the three main symptoms of chronic sinusitis or other respiratory infections, bronchiectasis (lung damage from frequent infections), and situs inversus. Treatment focuses on prevention of respiratory infections and can include inhaled medications, tubes in the ears and long term oral antibiotics. Typically the frequency of infections starts to diminish in the 20’s and people with KS lead normal adult lives. In the worst case scenario, they may suffer from permanent hearing loss due to untreated ear infections and in extreme cases may require lung transplant due to severe bronchiectasis.

A.J. also had bleeding in his brain at birth and has lived his entire life in an orphanage, so we anticipate that he may also have some developmental delays because of these factors. But with a loving family, good health care, and educational support we have every reason to believe that he will grow up to be a “normal” young man. But even if he is never “normal” according to society’s definition he is loved and cherished by God and by our family. We cannot wait to get him home!

Someone Said...

"If we truly believe that all human beings are created in the image of God, this forces us to place a high value on human life. Every child deserves to be raised in a loving family environment with a mother and father. It was never God’s original intention for millions of orphans to be sharing beds in crowded institutions or sleeping alone somewhere on the African prairie."




Tom Davis in “Fields of the Fatherless”

Facts and Figures

Some people see the world in black and white, concrete terms and this post is for those people.

 It is estimated that there are 147 million orphans throughout the world.
 Sub-Saharan Africa has the highest population of children who are orphans (49 million or 12% of all children)
 Roughly 500,000 children live in the U.S. foster system. About 1/4 of these children are legally available for adoption.
 There are over 1.5 million adopted children in the United States
 Every 18 seconds another child becomes an orphan
 Children who age out of the foster care system at age 18 face a sad future. By their mid-20s less than half will be employed, more than 80% of the men will have been arrested, 68% of the women will receive food stamps, and only 54% will have earned a high school diploma
 Children who age out of the orphanage system in Europe at age 14, 15 or 16 face equally bleak futures. 60% of girls will turn to prostitution just to survive; 70% of the boys will end up on the streets or in jail; and 15% of these children will commit suicide within 2 years of leaving the orphanage.
 Research has shown that adopted children “consistently thrive in loving homes” (CAFO, 2011, para. 2). Parenting any child is full of challenges, but adopted children are just as likely to thrive as biological children

And for those of you who are not so concrete, I offer this.

One little boy who is waiting for his Mommy and Daddy. Just one of many.

Someone Said...

"Time and experience have taught me a priceless lesson: Any child you take for your own becomes your own if you give of yourself to that child. I have borne two children and had seven others by adoption, and they are all my children, equally beloved and precious."

Dale Evansadoptive parent

We have had several people ask us if we are sure that we can love a child that is "not our own". I am never sure exactly how to answer this question because I know that before we started the journey to adopt I would not have understood the answer myself. The reality is that AJ is already "ours" and we already love him even though we have never met him! I know this makes absolutely no sense if you think about it logically, but I can tell you with certainty that it is the truth. I cannot explain it, so I am not even going to try!

How about some Black Friday shopping with a purpose?

I will admit that I spent a little time shopping today, although I got up much too late to get the really good deals. I won't tell what I got because I don't want to ruin any surprises!

Over the past few weeks I have discovered some unique gift ideas that will bring a smile to someone's face AND support a great cause. Check them out!

All Are Precious in His Sight -- Our friends the Patterson's are selling some great gear to raise the money to bring their boys home from Eastern Europe. You can take a look at all of the cool things here. If I had any extra money right now, I would definitely be buying one of the decals! 


Worldwide Orphans Foundation -- Offers some unique cards that can be used for any occasion. We all need cards for thank you notes, etc. so why not order some that will help make a difference in the life of an orphan?



Angel Covers -- Is it really time to think about sending out Christmas cards already? If you are like me and haven't even thought about it yet, check out the cards on this site. They also have a really neat blanket program. If you purchase a blanket, they will donate one to an orphan overseas.



Glitzy Glass Stars and One Heart Bulgaria -- This glass artwork is absolutely gorgeous! And the best part is that your purchase will help support One Heart Bulgaria's efforts to care for orphans. 3% of any purchase goes to One Heart Bulgaria, and if you scroll toward the bottom of the blog, you will see the special Bulgaria pendants - 50% of these sales goes to OHB!



Reece's Rainbow -- Every family has at least one person who seems to have everything. What in the world do you get them for Christmas? How about Angel Tree Dollars from Reece's Rainbow? You make a donation to Reece's Rainbow and they sent you a certificate for the recipient to "redeem" by choosing an Angel to receive the donation. What better Christmas present than the opportunity to give a child a forever family?














Happy shopping! Buy me something! ;-)

Just Waiting...

If you have ever seen the movie "The Incredibles" you might remember a scene where Mr Incredible asks the little boy on a bike "What are you waiting for" and the little boy replies "I dunno, something amazing I guess." That is exactly how I feel right now as we wait (and wait, and wait) to get all of the paperwork in order to submit our I800A to USCIS. We thought we had everything we needed, but it turns out that we needed two more pieces of paperwork to go with it. And now, it is taking forever to get those two pieces. One of them we were told might take 6 months to a year. Seriously?? 6-12 MONTHS to get a piece of paper? I understand government bureaucracy, but this is seriously ridiculous!! Do they not know our son is waiting in an orphanage without his momma and daddy? Our social worker and adoption agency are working to try to move things along, but it is SO frustrating for it to be taking this long when other families have gotten all of the required paperwork in 3-4 WEEKS.

Sigh...

Keep praying that things will start moving so that we can get AJ home!!

Thirty-One Fundraiser

Ready to start some Christmas shopping? How about some fashionable AND functional gifts from Thirty-One? Thirty-One is a Christian company that has great bags, baskets and totes in trendy patterns and fabrics.

Our friend Terry is hosting an on-line Thirty-One party for us and donating ALL of her profits to our adoption fund. So you can check off some of that shopping, get yourself a little something, and help bring an orphan home all at the same time. You can’t get better than that! J

To order, visit this link: http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E1223361&from=MYEVENTS