31 for 21: What is Down Syndrome and can Down Syndrome be cured?

Q: What is Down Syndrome?

A: Down Syndrome, also known as Trisomy 21, is caused when there is a triplication on the 21st chromosome. People with Down Syndrome have 47 chromosomes instead of 46, like people without Down Syndrome. This is the reason it is called Trisomy 21, being there are three 21st chromosomes instead of the usual two.

Q: Can Down Syndrome be cured?

A: Cured? No. But, can the processes and metabolic imbalances going on in their bodies be slowed? Absolutely! This is what Targeted Nutritional Intervention for Down Syndrome is all about. Please see our articles section for more information on that.

http://www.gotdownsyndrome.net/faq.html

 

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31 for 21: Diagnosis: Down Syndrome what to do about it?

Here is ANOTHER post that my oldest sister did. And by the way I fully agree with all of her post:)

"I have written to many people over the time my brother came into our life and I feel I should put the following up on the blog here, as it covers very well how those with Down Syndrome should be viewed particularly in the area of a diagnosis.God is the one who does EVERYTHING and He causes EVERYTHING to happen, whether it be something wonderful or something horrible. I'll paste in some verses here that show that:Romans 11:36
"For of Him and through Him and to Him are all things, to whom be glory forever. Amen."Lamentations 3:32
"Though He causes grief,
Yet He will show compassion
According to the multitude of His mercies."Lamentations 3:37-38
"Who is he who speaks and it comes to pass, When the Lord has not commanded it? Is it not from the mouth of the Most High that woe and well-being proceed?"Exodus 4:11
""Who has made man's mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the LORD?"The above verse is God talking to Moses. God is the one who makes the mute, the deaf, the seeing and the blind. If you had a child who was mute, deaf, or blind, what would you do? Just insert the word "Down Syndrome" into the above verse . . . who makes the person with Down Syndrome? Has not the Lord? The answer is "YES!" What do you do about it? While yes, there may be some dissapointment or sadness in regards to the diagnosis, especially if there are health problems. Yet, you should believe the Lord, praise and give thanks to Him for his handiwork! As the following verse says,Psalm 100:3-5
"Know that the LORD, He is God;
It is He who has made us, and not we ourselves; We are His people and the sheep of His pasture. Enter into His gates with thanksgiving,
And into His courts with praise.
Be thankful to Him, and bless His name.
For the LORD is good;
His mercy is everlasting,
And His truth endures to all generations."The Lord is the One who has made us. You and I did not choose to be the people we are. My brother with DS, or anyone with DS, did not choose to have Down Syndrome. God is the one who made you and I, my brother and anyone with Down Syndrome. We had no choice in it. It is all His will! The bottom line is you need to believe in Him and trust Him, since everything is His and His will. He commands us to give thanks to Him in everything,1 Thessalonians 5:18
"in everything give thanks; for this is the will of God in Christ Jesus for you.""

http://gotdownsyndrome.blogspot.com/2007/01/diagnosis-down-syndrome-what-to-do.html

 

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31 for 21: Five Blessed Years - 2 years ago

Here is another post that my oldest sister did 2 years ago called "Five Blessed Years" . . . our family is VERY blessed and thankful for Osiyyah.

"Five years ago today, our life changed forever. Osiyyah & his twin sister, Yophiyyah were born.

My then 14 year old sister & I stayed with our mom in the hospital from the time she was admitted late Wednesday night, Feb. 2nd. As my sister & I stood in the hallway outside of the OR, little did we know how different our life would be from that day forward.

The twins were born naturally with no complications. Osiyyah was "Twin A" and Yophiyyah "Twin B." The babies were born at 2:05 & 2:10pm Thursday afternoon, February 3rd 2005. My sister & I briefly got a peek at the babies as the nurses wheeled them into the NICU. I remember how tiny they were. Just under 6 lbs each.

Shortly thereafter, my dad came out of the OR and went to follow the babies into the NICU. A few moments later he came back with "there is some bad news." Our hearts stopped, not knowing what he was going to say. He proceeded with "it looks like the little boy has Down syndrome." My sister & I were both relieved and I thought "oh, that's not bad."

After the babies were born and we knew this information, we went into the waiting room where the rest of the kids were and some of our friends. Being exhausted from practically no sleep in over 24 hours, my sister & I both started bawling as soon as we told everybody the news that the babies were born. We probably looked like a bunch of geeks in the waiting room that was full of other people! At that point, we were so excited to have two new babies! Praise the Lord!

From that day, our lives have changed for the better. The first few months after the twins were born, there were some challenges. With the two week NICU stay, then having to go to the pediatrician's office every 2 weeks to a month for Osiyyah. Looking back, those office visits could've been avoided had we known more. But, we live & learn.

Praise God he has given us Osiyyah. Life would be so dull & sad without him. He makes us laugh all the time.

The last 5 years have been a learning experience and I'm sure we have lots more to learn. Osiyyah is incredibly blessed to be born into our family & in this country. Into a family who loves him, even though God made him with a little something extra.

Osiyyah is thriving beyond what we ever thought and what we were ever told. I am so thankful God has given us the knowledge & understanding to help Osiyyah be where he is at today. Had we not found out about Nutrivene and the so many other things that we do with Osiyyah, I'm convinced he would not be thriving like he is today. Praise the Lord for his kindness towards Osiyyah.

To put things in perspective, if Osiyyah were born into a family in another country, especially Eastern Europe, it would be very likely that he would be in an orphanage right now. Because he is 5 years old, he would now be on his way to a mental institution. He would not be thriving. His life would consist of laying in a crib, getting hardly any attention. I can't imagine someone doing that to a child, simply because they have Down syndrome. I can hardly think about this without crying. But, this is the reality of so many children with Down syndrome in other countries. It's incredibly sad.

So, today we will sing "Ha day" (Happy birthday), as Osiyyah says, to him & his sister. And, today, as every other day, we are very thankful God has put Osiyyah in our lives.

I love you O & Yo!"

http://gotdownsyndrome.blogspot.com/2010/02/five-blessed-years.html

 

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31 for 21: The Book - Down Syndrome: What You CAN Do by Qadoshyah Fish

The Book called - Down Syndrome: What You CAN Do by Qadoshyah Fish (my oldest sister) is available on Amazon! - http://www.amazon.com/Down-Syndrome-What-You-CAN/dp/0615259162/ref=sr_1_1?ie=UTF8&s=books&qid=1244224020&sr=8-1

31 for 21: "Panic" to stop the Down Syndrome - By my sister

Here is another post that my oldest sister did last year.

"When a family finds out their child has Down syndrome, they want to be able to find out what they can do for their child. Some of those families look into supplements and drugs to help their baby, which I think is great. 

But, there are some who feel that families who start their baby on supplements so quickly (at a young age - just weeks to months old), are in a "panic" about the Down Syndrome and feel the need to "do something" to stop it. 

For some families this might be the case, but more often then not, the families I have talked to are not in a panic about what they can do. They simply want to do what is best for their baby and give their baby what they feel is the best chance to do well. For some families, this means starting their baby on a variety of supplements and possibly drugs as early as possible. 

We did not find out about any sort of supplemental/nutritional intervention for O until he was 8 months old. Had we found out about it when he was younger, we could've looked like we were in a "panic," because we would have started Nutrivene-D when he was just days old.

But, it's not because we want to stop the Down syndrome. It's because we want to do what we feel is best for O. And I believe that's where most families are coming from.

The earlier you can start supplementation to combat the negative effects of the extra chromosome, the better. The more time that goes on without intervention to combat the harmful aspects of Trisomy 21, the more damage that is done. You cannot fully stop the oxidative stress, mental retardation, or neurological concerns with just supplementation, but you can slow them down a lot.

I fully support and encourage parents who want to start supplementation as early as they feel is safe. For some parents that may be from day 1 and for others, that may be at a year old. For some, it may be a long list of supplements, and for others it may be a more conservative list, which slowly gets longer as the child gets older.

The biggest concern here is to make sure you, as parents or caregivers, are fully researched and convinced, in your own mind, regarding any supplement or drug you give your child.

There are things to be cautious of, especially for a young baby. You don't want to overload their system, particularly their gut, especially if they have GI concerns. But that's where researching what you are going to supplement with comes in. If you are well researched, have talked to others who are knowledgeable, you are on the right track.

I would not want to discourage someone by saying they are in a "panic" about the Down syndrome. In a sense, there is a race against time which is very real and this is why I think it's very important for supplementation to be started at an early age."

http://gotdownsyndrome.blogspot.com/2011/12/panic-to-stop-down-syndrome.html

 

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31 for 21: What is Down Syndrome?

Here is a post that my oldest sister did last year called: What is Down Syndrome?


"I haven't ever really posted anything about this on the blog before, so I thought it would be good to post. It seems so basic to those us involved with Down Syndrome, but a lot of people are totally clueless when it comes to what Down Syndrome is caused by.

Here's some basic information shared from the National Association for Down Syndrome:

Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in one in every 691 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different.

Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number and shape. Chromosomes may be studied by examining blood or tissue cells.

Down syndrome is usually caused by an error in cell division called nondisjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age."

http://gotdownsyndrome.blogspot.com/2011/10/31-for-21-what-is-down-syndrome.html 

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31 for 21: Liberty Singers at the American Spirit Rally

Us and another family (that we are best friends with) have a singing/dancing group called Liberty Singers. So we were the entertainment at the American Spirit Rally on Tuesday, October 2nd.

O, my brother with Down Syndrome really enjoys to sing and dance.

Come Like us on FaceBook - http://www.facebook.com/pages/The-Liberty-Singers/261987383904013?fref=ts

You can go to this link to hear some of our songs that we sing - http://www.reverbnation.com/graceyoung

Also come follow us on Twitter - https://twitter.com/LibertySingers

Here are some pictures from the event -

The two Liberty Singer mommas.

One of the Liberty Singers singing - Grace Young.

The Liberty Singer group.

 One of the Liberty Singers playing the Guitar - Brian Young.

Some of the Liberty Singers talking to Hugh Smith.

My oldest sister, Qadoshyah, giving a speech.

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