Friday, November 27, 2009

Adoption Awareness Month

November is Adoption Awareness Month. Adoption is something very near & dear to me. If I was able to adopt, I would. But, as of right now it isn't able to happen.

Why is adoption so important? In many countries around the world, Russia, Ukraine, Bulgaria, Serbia, Republic of Georgia, Ethiopia & so many others, children with Down syndrome (& other special needs) are put away into mental institutions. Left to die. It is a horrific & incredibly sad reality. The video below gives a small glimpse into the way many of these children are treated. Not all institutions are as horrible as the one shown in this video, but nonetheless many of the children transferred to mental institutions die within the first year of being there. From sickness, malnutrition, starvation.

Because of this horrible reality, a group called Reece's Rainbow brings awareness and finds homes for many children in orphanages around the world. In the 3 short years it has been in existence, a couple hundred children have found homes.

Due to this fact, a girl named Lydia started a project (the "Darya Project") a week before Thanksgiving to bring one of the children shown on Reece's Rainbow's website home. She set out on a goal to raise $20,000 in 8 days (by Thanksgiving). If she was able to do this, her family would adopt a little girl, Darya, in an orphanage in Eastern Europe. Through bake sales, car washes, photo shoots, and many other things, Lydia was able to raise $26,000 by Thanksgiving morning! As of Friday, the total was $28,500. The extra money is going to another family who has been wanting to adopt a little one with Down syndrome. So, after 8 days of fundraising, 2 children will be rescued out of the orphanages in Eastern Europe.


Wednesday, November 11, 2009

Through Uncharted Waters

I received an email today from Greg Cole, a professor of Medicine & Neurology at UCLA. He works with Sally Frautschy on Curcumin and other things. He was emailing in regards to Longvida Curcumin and our use of it.

His email was a word of caution. A caution to realize that we are "experimenting" with Longvida Curcumin, as it is not clinically proven to help individuals with DS. There have been no clinical trials done on it's safety & use in people with DS. This is a great concern and word of caution and I totally understand where he is coming from and agree.

Whenever we use a supplement that is not clinically proven in people with DS, we are going through uncharted waters and "experimenting." We always need to be cautious and aware of what we are doing. Aware of any changes that are seen with a certain supplement, be it good or bad. And aware of the dosage we use, whether it is too high or too low, or just right.

We've been on the path of using various supplements and "experimenting" with Osiyyah since he was 8 months old (he's 4 1/2 years old now). The way we feel, is that we have to do everything we can for him. Even if something has not been proven in clinical trials. If the research looks promising, is something that looks like it'll benefit him, and as best we can tell is safe to give him, we give it a try. Of course we don't jump into giving him anything unless we have thoroughly researched and am convinced that it is safe & good to try.

It would be wonderful if clinical trials are done, but we can't wait for clinical trials to be done. My brother's life & understanding is on the line. He needs the help right now. This is why we, and many other families of children with DS, take the initiative to use certain supplements well before they have gone through clinical trials.

If we were to wait until something was proven to help children with DS, it would be YEARS and the most crucial time of Osiyyah's development would be gone. I want to do all I can to help my brother reach his fullest potential. That's what I determined from the time he was born and we knew he had DS. To do any less, would not be beneficial to him.

I am so incredibly thankful that we have taken many out of the norm, against the grain steps, because Osiyyah has progressed so well and benefited from them so much. I am convinced he would not be where he is at today had we not started this journey of research back when he was 8 months old. I know that because he visually, before our eyes changed and was a different child, when we started him on the first supplement back then. Granted, that first supplement is Nutrivene-D. But, still, there are MANY people who advocate not to use that supplement, because it is not "clinically proven." If we would've listened to many of the "professionals" in the DS world, we would not be giving Nutrivene-D. I'm so thankful we didn't listen to them.

There is so much that many families use with their kids with DS that are not clinically proven in DS. But, why are they used by so many families? Because someone took the initiative and stepped out of the box and decided to give that particular thing a try. Those who have taken the initiative into uncharted waters have benefited many families. To name a few, Dr. Turkel, Dixie Lawrence, Dr. Leichtman, Teresa Cody, and others.

Our family will always be thankful for the work of people like Dixie Lawrence & Dr. Leichtman in regards to Nutrivene-D. It changed Osiyyah's life. He is not the boy he was before Nutrivene-D.

Or mom's like Chris Hempel, whose twin daughters have Niemann-Pick Type C disease. That's how we found out about Longvida Curcumin. Longvida Curcumin has changed Osiyyah's life also. He can communicate & understand so much more than he was able to 5 months ago. It's amazing.

We will gladly continue to go through uncharted waters and step out of the box to be able to benefit my wonderful little brother and others with Down syndrome.


Monday, November 2, 2009

A Time To Dance

Osiyyah thoroughly enjoys dancing! We dance together quite often and he always has such a blast. One of my brother's was doing some remodeling to the bathrooms, so he took out the mirror. Osiyyah thought it was the coolest thing to dance and watch himself in the mirror :)!


Sunday, November 1, 2009

Silent Auction At "From The Trenches of Adoption"

Valerie & her husband have biological triplets, adopted 2 boys with special needs from 2 different countries within the last couple years. They are now in the process of adopting 3 more children from Bulgaria.

Because the costs of adoption are so high, they are having a silent auction over at their blog From The Trenches of Adoption. There are a lot of nice items available at the silent auction.

As some of you may know, I have a small home business doing graphics & web designing, Country Girl Designs. I donated a Blog Makeover to the Silent Auction.

You can see all the items at this link (just keep scrolling down to see them all). You can see the Blog Makeover at this link.

Feel free to pass on & forward to anyone you know :)!


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