The Day I Met Tay-Sachs Disease

As promised last week, I will tell you the story of how I became aware of this horrible disease.

One morning in late July 2006 I had just sat down to nurse Shea, who was then 11 months old, before her morning nap. I was flicking through the TV stations when the most goreous little face caught my attention!
CN8 was doing a story on Dylan James 'DJ' Manning. This 4½ year old was living with Tay-Sachs Disease but at this point was losing his battle. They went on to state how it was only a matter of days before this precious little boy would 'receive his wings'. Needless to say, I cried my eyes out then and basically the rest of the day. Unfortunately, I only caught the very end of the story. All I knew was that they were from Pennsylvania. The following week I did some searching on the internet. It took me that long because being summertime my sons lived on the computer so I had a hard time obtaining access.
Anyway, I finally found a link to Dylan's wedsite. I signed up to his guestbook and left him an encouraging note. The date was August 2, 2006. I went on the next day and was completey devastated to find out that Dylan James Manning received his wings on Wednesday, August 2, 2006! I continued to visit his guestbook and eventually his mother, Sherri and I started e-mailing each other. On November 25 of that year I attended ^DYLAN^'s 5th Birthday Celebration up in Pennsylvania. Although, it was quite a bit of a drive, it was well worth it! I got the chance to meet ^DYLAN^'s family in person. His mom, Sherri and dad, Brian are the most brave and strongest people I have ever met! His little brother Brady, who is 4 months older than Shea, is the spitting image of his big brother, especially as he gets older! This family has been such an inspiration to me and many others! They have been there for me at times when I just could use a little cheering up!! They are WONDERFUL!!

I tell Sherri often, I don't know why we were brought together and we may never know. But I am definitely glad we were!! If anything, I can at least be another voice in the effort to GET THE WORD OUT!! Won't you also please help us?


Here is a poem Sherri wrote about ^DYLAN^'s passing.

Dylan’s Wings

The time has come, we must say goodbye.
Our precious little angel, you have finally earned your wings!
We know that you are with us and want us not to cry,
It’s finally your time to slide down rainbows and ride the big boy swings!
Just Believe that you made a difference in the lives of so many.

Though you’ve only spoken a handful of words,
Today is the one that hurt us the worst…
“Ou…ch” was the only one you had to cry,
That’s when we knew you were ready to fly!

We had the most perfect walk to see the sunrise,
It was orange like a basketball, we know now you are DRiB-Ling high!
We swooped you up on the hottest day of the year
To show you the name we’ve engraved in the yard,
Then Maddie went out to pay her regards.

We took Pappy for breakfast at Atglen’s world famous café,
Then Grandpop and Brady met us along the way.
A peaceful stroll home in your fancy green wagon
So that we could wish Jessica Happy Birthday from Dylan.

It was the most perfect occasion, all of your grandparents here by your side.
God decided he must call you home & it’s now in him we must confide.
Alas, mommy finally got the hint…it’s a tubby you wanted, and so you got your wish. Bells rang for you as you got your wings on the 2nd of August 2006.
Warm water you’ve loved from the first moment of birth,
So that is our last memory here on earth.
Before your last breath you gave quite a smile
And then Poof…like magic the pain was all gone.
Near, far, wherever you are, we know your heart will go on.

Then to top our day off, our favorite Boston Red Sox got the job done,
Just for you, D they scored a winning home run!
We promise to carry out your mission until our days are done.
So until we meet again, baby boy, you’ll always be our precious son.

WE WILL ALWAYS LOVE YOU D, TO THE MOON AND BACK!
XOXOXOXO

Just Believe,
Mommy, Daddy, Brady and Madison



(^Madison^ was there loving dog who passed away the December after ^DYLAN^. He received a Christmas present up in Heaven; his loyal pet!)

An angel gets his wings!
In memory of:
Dylan James 'DJ' Manning
November 22, 2001 - August 2, 2006



You can learn more about ^DYLAN^ and his family by visiting his website:

http://www.djsfoundation.org/intro.htm

Now I would like to let you all know that this disease is PREVENTABLE!!

Yes, it is preventable...with a simple blood test!!

Anyone who has heard of this disease probably thinks it only occurs in people of Jewish origin. Well, this isn't true.


How do I know if I am a Tay-Sachs Carrier?

It is a simple blood test to indicate if you are a carrier of Tay-Sachs Disease. Most doctors assume that unless you have a Jewish background there is no need to be tested. However, this misconception brought Dylan to our lives and we are here to educate the general public that this is no longer the case.
1 in every 50 IRISH AMERICANS IS A CARRIER OF TAY-SACHS
1 in every 27 FRENCH-CANADIANS IS A CARRIER OF TAY-SACHS
1 in every 27 CAJUNS IS A CARRIER OF TAY-SACHS
1 in 250 OF THE GENERAL POPULATION IS A CARRIER!
GET TESTED, YOUR BABY'S LIFE DEPENDS ON IT!


So, again I urge you to GET THE WORD OUT!! Please pass this information along to EVERYONE you know! What a wonderful gift you could give to a young couple just about to get married!!
FYI: Even if you have had healthy children, please be aware that it is still possible to have a child born with Tay-Sachs! So, again EVERYONE should get tested!!


Next week I will share some more info on Tay-Sachs and also introduce you to another
Tay-Sachs family.