Sunday, November 19, 2017

Billy Martin Hires New Major League Baseball Bat Boy

November 20, 2008 by  
Filed under Videos


Kevin Eadie To Drag Bats For Joe DiMaggio, Ted Williams, Mickey Mantle & Babe Ruth
All-American bat boy Kevin Eadie, 15, was called up to the “Major Leagues” last week and has been selected by Billy Martin to drag bats for Joe DiMaggio, Babe Ruth and other former Major League baseball stars.  The young dugout batboy star formerly with the Peninsula Pilots of Hampton, Virginia, has made it to the big leagues, his ultimate dream.

If you love baseball, we hope that you will spend 4 minutes today watching our tribute video to this boy who loved baseball and send it along to others to help us raise awareness of Niemann Pick Type C, a fatal brain disorder often referred to as the “Childhood Alzheimer’s.”   

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A Letter From A Muslim Mom to a Catholic Mom About Our Dying Children

November 11, 2008 by  
Filed under NPC Family Stories

Hisan Pakistan

Dear Chris,

I am not a very interesting person…and as of now only a brokenhearted one. I had a very nice childhood, a loving family and fun loving friends, got what I wanted, studied what I wanted or where I wanted. I was taught never to do anything bad with others, only to help the less privileged ones.  I was a top student, had many distinctions during my academic career and somehow or the other became the first on camera female reporter of the state run news television in Pakistan.

I was the youngest one in the media circles to have worked with the decision makers at the highest corridors of power and traveled with my country’s President and the head of the Government, the PM to their visits abroad.  During my international traveling, I met with the world leaders, was praised for my work for being the one who would not compromise on any news story for political expediency and yet was surviving well.  Whenever I used to go out with my family – people would recognize me and ask for my autograph.

But that was not what was the best thing that happened to me…it was Hisan….. who although lost his father very early in his life was a wonderful and delightful child.  Being a single mother, I thought I would give Hisan the best of everything so that no one would think that he did not get what he desired since he had no father.  I wanted so much to give Hisan and education abroad as I had to miss my scholarship when I got married.  I guess it’s the same unfinished agenda on my life that I wanted so much for have Hisan have.  I believe every parent looks towards his or her child in terms of their unfulfilled aspirations.  I had many offers in my hand but I regretted to all as I wanted Hisan to be near to me.  I left the most coveted beat and resigned from my media position when I thought I was missing Hisan on the way.  People thought that I was crazy for doing that…..a professional suicide. As for me, I never once regretted my decision.

You see it is not me who is important in this picture..it is Hisan…the ‘miracle boy’ who had left the most experienced and seasoned doctors in awe owing to his resilience and bravery to fight back this pathetic Niemann Pick Type C disease. Once in a code blue situation, Hisan came back after 45 minutes of CPR, all soaked in a pool of his own blood…and went home to spend some very memorable time with his family.

Hisan was the favorite of all…..be it doctors, nurses, therapists…he would have the pricks done on him without crying…would keep quiet even in extreme pain and his eyes would always exude compassion…tolerance and a certain peacefulness that would put me to shame. When everyone had lost hope Hisan would fight back and lead the doctors to think otherwise. His fighting spirit would prove everyone wrong.

I would become the proud Mom of a very special child.  He would never let me down..never..and it became an altogether different story that my heart would cut in shreds upon every needle that was poked in him.  Never mind missing Stanford.  One after another he lost everything except his beautiful eyes that would tell everything to his Mom and his beautiful spirit.  He died so peacefully.  So becoming of him.  I cry for him each time and I mourn him.  My world is not only blank, it is meaningless as I have lost the will to live anymore.  The only thing matters to me is the long drawn wait that I have to go through to meet him some time when he is happy and without the monster.   You ask for my religion?  For me it is probably not a bad bargain after all to give him back soon and then to have him forever…that’s my belief as a human being and as a Muslim too.
Love to your Princesses!
Nabiha, Pakistan

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Calling Jerry Lewis – Scientists Report Understanding Niemann Pick Type C Could Lead To Treatments For Duchenne Muscular Dystrophy

There are new reasons for hope not only for families of Niemann Pick Type C kids but for families with children suffering from Duchenne muscular dystrophy, a fatal recessive X-linked form of muscular dystrophy that strikes 1 in 3500 boys and leads to paralysis and ultimately death.

According to a research paper released from the University of Washington, understanding the mechanism of Niemann Pick Type C (NPC), a fatal progressive neurodegenerative disease that is trying to take the lives of Addi & Cassi could help researchers find new treatments for Duchenne Muscular Dystrophy (DMD) and possibly muscular dystrophy in general.
Picture of Jerry Lewis
In the studies conducted by the University of Washington, “transgenic expression of Neimann Pick Type C 1 (NPC1) in skeletal muscle ameliorates muscular dystrophy in the Dtna-/- mouse (which has a relatively mild dystrophic phenotype) and in the mdx mouse, a model for DMD. These results identify a new compensatory gene for muscular dystrophy and reveal a potential new therapeutic target for DMD.”

In addition, the researchers report that “molecular abnormalities in NPC1-null cells suggest possible links to known causes of muscle degeneration. One particularly intriguing connection involves the caveolins. Caveolin-3, the muscle-specific form, binds directly to the dystrophin complex members, β-dystroglycan at the sarcolemma and is required for the correct targeting of the dystrophin complex to cholesterol-sphingolipid rafts/caveolae. A link between caveolin-3 regulation and the muscular dystrophies is well established. Muscles from Duchenne muscular dystrophy patients and mdx mouse muscles have elevated caveolin-3 levels.”

The Muscular Dystrophy Association (MDA) through the help of Jerry Lewis has raise approximately $2 billion for neuromuscular patient care and research since its inception yet a cure has not been found to date.  This paper suggests that new therapies could be found for muscular dystrophy by looking at the NPC1 gene, a gene that causes a rare and fatal childhood disease that strikes only 500 children worldwide.   Does anyone have Jerry Lewis’ number?

Posted by Chris (MOM – Mom On a Mission)

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