Merry Christmas from the Daniels Family 2006

Metachromatic Leukodystrophy web site links

Metachromatic Leukodystrophy web site links:

http://www.ninds.nih.gov/disorders/metachromatic_leukodystrophy/metachromatic_leukodystrophy.htm

http://www.emedicine.com/ped/topic2893.htm

http://healthlink.mcw.edu/article/921440824.html

http://www.mldfoundation.org/

http://www.wrongdiagnosis.com/m/metachromatic_leukodystrophy/intro.htm

http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Leukodystrophy%2C%20Metachromatic

http://www.nlm.nih.gov/medlineplus/ency/article/001205.htm

http://en.wikipedia.org/wiki/The_Myelin_Project

http://www.myelin.org/

http://www.mldfamily.org/

http://todddaniels.blogspot.com/

http://odinslair.blogspot.com/2006/10/metachromatic-leukodystrophy.html



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The Greatest

Hear the song:
http://www.baseball-almanac.com/poetry/thegreatest.ram

The above link is just a clip to a 32 second sample.
Requires RealMedia Player, or Alternative.

Links to full versions of the song:
http://www.simplyangel.com/angelfiles/MidiPageMusic/KennyRogers-GreatestBaseballPlayerOfAllS.A..wav

Most media Players will play the above link.
http://www.scrabaseball.com/thegreatest.rm
Requires RealMedia Player, or Alternative.

The Greatest by Kenny Rogers (1999)

The Greatest

Little Boy, in a baseball hat Stands in the field with his ball and bat Says I am the greatest player of them all Puts his bat on his shoulder and he tosses up his ball And the ball goes up and the ball comes down Swings his bat all the way around The world's so still you can hear the sound The baseball falls to the ground Now the little boy doesn't say a word Picks up his ball, he is undeterred Says I am the greatest there has ever been And he grits his teeth and he tries it again And the ball goes up and the ball comes down Swings his bat all the way around The world's so still you can hear the sound The baseball falls to the ground He makes no excuses, He shows no fears He just closes his eyes and listens to the cheers Little boy, he adjusts his hat Picks up his ball, stares at his bat Says I am the greatest the game is on the line And he gives his all one last time And the ball goes up like the moon so bright Swings his bat with all his might And the world's so still as still can be And the baseball falls, and that's strike three Now it's supper time and his mama calls Little boy starts home with his bat and ball Says I am the greatest that is a fact But even I didn't know I could pitch like that

The Greatest

http://www.baseball-almanac.com/poetry/po_sk-rogers.shtml

Fwd: UPDATE

another update from Todd's aunt.

HI EVERYONE

I JUST TALKED TO BOBBIES MOTHER-IN-LAW ON THE PHONE SHE TOLD ME TODD OPENED HIS EYES THIS MORNING FOR ABOUT 30 MINUTES AND A NURSE WILL BE THERE TODAY TO SEE HIM,,,I GUESS PRAYERS ARE ANSWERED,,,,LISA

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http://todddaniels.blogspot.com/

Todd Daniels update 6-29-06

A message sent by Todd Daniels aunt.

- Jamie

 

Sent: Thursday, June 29, 2006 12:58 AM

Subject: todd

hi everyone

 

just wanted to let you know todd is not doing well,bobbie said he will not even open his eyes hardly,,,today hospice went there to evelauate him and now they will go 2 times a week for now ,,,everyone please pray for TODD he is a very loving lil boy ,,,,i want him to stay with us as long as we can keep him,,,,,,,,lisa

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http://todddaniels.blogspot.com/

Todd with Family

more pictures of Todd part 2

more pictures of Todd

Todd the Patriot

Update on Todd Daniels 5-25-06

I finally got a chance to sit down and give you some updates.

Todd is pretty stable right now.

He now has Scoliosis really bad. They wanted to put a rod in his back, but we decided against that. Eventually he will have a compressed lung. Which they wanted to do a trache to help with his breathing. We also decided against that. I just can't see him going thru all of that. We are now thinking of quality of life not quantity.

When he has problems breathing, we have to reposition him, which makes him breathe better.

His school is out for the summer and he will be going into the 3rd grade.

Just the other day he received a package from the Atlanta Braves. They sent him a hat, pennant, ball, bracelet, cards & notebook. It was very nice.

He really still loves to watch TV. He is watching SandLot right now. He loves it.
- Bobbie Daniels
Mother of Todd Daniels

Todd Daniels

Todd Daniels

I read this and the thoughts of 3 years ago went thru my head. Todd doing the same thing. It has been a miracle that he is still with us, but we take it day by day and keep him happy. I just wish he could do it again. He loved baseball, he would not go anywhere without an baseball hat and glove. He seemed to sleep and eat baseball. I just wonder sometimes if he thinks about it. I know one of these days he will be able to play again. Then he can hit his GRAND SLAM!!

- Bobbie Daniels

Todd Daniels Mother

http://todddaniels.blogspot.com/

Subject: a story we should all read

You make the choice! Don't look for a punch line; There isn't one! Read it anyway. My question to all of you is: Would you have made the same choice?

At a fundraising dinner for a school that serves learning disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question:

"When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"

The audience was stilled by the query.

The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes, in the way other people treat that child.” Then he told the following story:

Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked,” Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

Shay's father approached one of the boys on the field and asked if Shay could play, not expecting much. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning."

Shay struggled over to the team's bench put on a team shirt with a broad smile and his Father had a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and p layed in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.

At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible 'cause Shay didn't even know how to hold the bat properly, much less connect with the ball.

However, as Shay stepped up to the plate, the pitcher, recognizing the other team putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least be able to make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.

The game would now be over, but the pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.

Instead, the pitcher threw the ball right over the head of the first baseman, out of reach of all team mates. Everyone from the stands and both teams started yelling, "Shay, run to first! Run to first!" Never in his life had Shay ever ran that far but made it to first base. He scampered down the baseline, wide-eyed and startled.

Everyone yelled, "Run to second, run to second!"
Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to second base. By the time Shay rounded towards second base, the right fielder had the ball, the smallest guy on their team, who had a chance to be the hero for his team for the first time. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions and he too intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bas es toward home.

All were screaming, "Shay, Shay, Shay, all the Way Shay"

Shay reached third base, the opposing shortstop ran to help him and turned him in the direction of third base, and shouted, "Run to third! Shay, run to third" As Shay rounded third, the boys from both teams and those watching were on their feet were screaming, "Shay, run home! Shay ran to home, stepped on the plate, and was cheered as the hero who hit the "grand slam" and won the game for his team.

That day, said the father softly with tears now rolling down his face, the boys from both teams helped bring a piece of true love and humanity into this world.

Shay didn't make it to an other summer and died that winter, having never forgotten being the hero and making his Father so happy and coming home and seeing his Mother tearfully embrace her little hero of the day!

AND, NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people think twice about sharing. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools and workplaces.

If you're thinking about forwarding this message, chances are that you're probably sorting out the people on your ad dress list that aren't the "appropriate" ones to receive this type of message. Well, the person who sent you this believes that we all can make a difference. We all have thousands of opportunities every single day to help realize the "natural order of things." So many seemingly trivial interactions between two people present us with a choice: Do we pass along a little spark of love and humanity or do we pass up that opportunity to brighten the day of those with us the least able, and leave the world a little bit colder in the process?

A wise man once said every society is judged by how it treats it's least fortunate amongst them.

May your day, be a Shay Day, sunny today tomorrow & always

jamiet's reviews

jamiet's reviews

Regarding my cousin Todd, and his battle with Metachromatic Leukodystrophy.

http://jamiet.stumbleupon.com/review/2084743/