Friday, October 14, 2011

Find My Family Friday - Denis



 

TRANSFERRED

Eleven simple letters which strike fear and sorrow in the heart of anyone who has ever advocated for an orphan with special needs. Well, sometime within the last couple of months, our teeny tiny Denis was transferred (you can read more about Denis here, here and here).


There simply are no words. I have been so worried about Liza being transferred since she is nearly five and a half, I know that Andrey is also at risk of being transferred as he turns five next month… But Denis is still so young and so small, I just didn’t see this coming.


Denis has been transferred to the older special needs orphanage that I volunteered at while I was over there. While it is far from the worst place there is, they are simply not equipped to care for someone as young and as fragile as Denis. When I was there, Maxim was in the youngest group at the orphanage and was about average in size compared to the rest of his group.

Look at Maxim:


Now look at Denis:


Maxim looks like a giant compared to Denis, who is still very much a baby. I just can’t imagine Denis mixed in with all those bigger kids.


Denis is also medically fragile, another reason why he needs a family quickly. Denis has Noonan syndrome. I know it’s intimidating/overwhelming to think about adopting a child with a disease you’ve never even heard of. That’s why I thought I’d provide you with a little more information…

From the Mayo Clinic:
“Noonan syndrome is a genetic disorder that prevents normal development in various parts of the body. A person can be affected by Noonan syndrome in various ways: unusual facial characteristics, short stature, heart defects, other physical problems and possibly lower intelligence.
There's no specific treatment for Noonan syndrome. Management focuses on controlling the disease's symptoms and complications. Treatment of the symptoms and complications that occur with Noonan syndrome depends on their type and severity. Many of the symptoms associated with Noonan syndrome are treated just as they would be for anyone else experiencing a health problem. Taken together though, the many problems this disorder can cause require coordinated management by your health care team.”


Some of the symptoms that often present in a child with Noonan syndrome include:

Heart disease
Growth issues
Musculoskeletal issues
Learning disabilities
Eye problems
Abnormal bruising or bleeding
Lymphatic problems
Genital and kidney problems
Skin problems

According to Denis’ medical file, he has a congenital heart defect (atrial septal defect), severe delay of psychological and motor development, a drooping right eyelid and farsightedness as well as hypospadias (a birth defect in which the opening of the urethra is on the underside). One thing I did find interesting in my research is that Noonan syndrome is considered difficult to diagnosis, even here in North America. Therefore, it is entirely possible that Denis may not have Noonan syndrome at all… he certainly wouldn’t be the first misdiagnosed child to come from home from Eastern Europe. That said, any prospective adoptive parent should try to be as informed as possible.
You can read more about Noonan syndrome here: http://www.mayoclinic.com/health/noonan-syndrome/DS00857 and check out the Noonan Syndrome Support Group here: http://www.noonansyndrome.org/

All in all, Denis is just a little boy who needs and deserves the love of a family more than anything else. Yet my fear is that he will not get it. Ever since I heard that he had been transferred I can’t help feeling like Denis will not survive long in that place. Denis needs for his story to be made known, he needs our money, he needs our prayers… he needs a family NOW. For more information or to donate, click here.


I want to leave you with this video… For those of you in the Reece’s Rainbow community, you are probably familiar with the incredible Sarah B. For those of you who aren’t, Sarah is an amazing 13-year-old girl with an immense heart for orphans. We first “met” via e-mail shortly after I arrived in Denis’ country. Sarah had been there just a month or so before me and spent a morning loving on some of the kids who would later become known as “my angels”. We have stayed in touch ever since and she continues to inspire me with her passion and generosity. Anyway, about a month ago Sarah put together this video to advocate for Denis and it is so beautiful and so powerful, I just had to share it…

Could you be his mommy???



Denis is listed as “Ryan” on Reece’s Rainbow;
in order to protect his identity, when sharing about him on your own blogs, facebook pages, etc. please use his Reece’s Rainbow name

3 comments:

Sarah said...

Thanks soo much for sharing the video! :)

Praying for his family!!! And they would step up SOON!!! He soo needs to get out! ♥

Sarah
www.matthew18vs14.blogspot.com

Jane@flightplatformliving said...

i have cried till i ache in the UK over this news!! it is so wrong!

i agree that unheard of syndromes can be daunting! i know, i have a child who was dagnosed with Smith Magenis Syndrome at 2 and half years old!

but i want to add these extra extra extra special kiddies are magic. My Tilly presents many challenges with her battle with sms but she is also our joy and the love affair of my life!

Oh where are you Mama?

Natalie said...

I love how you can put into words what I am feeling but cannot seem to express. I am praying I will finally love on him on Thursday, but it is still not a sure thing by any means. I would love to hold a giveaway for him to help raise his grant fund, you have quite a few followers who have grown quite attached to him, do you think anyone might be willing to donate to or spread the word about or pray for the giveaway?