May 22nd letter in the Congressional Record

[Guest guest]

Maya Fielder's letter with recorded statement by Senator Harkin

Mr. HARKIN: Mr. President, today I chaired a hearing on Parkinson's

Disease in the Labor, Health and Human Services and Education

Appropriations Subcommittee. I was

profoundly touched by the victims of this disease who came to testify

and by the many, many victims, families and advocates who came to

Washington to put a human face on this

horrible disease. As a Congress, we can't take the time to listen to

every story but I ask unanimous consent that one little girl's story be

printed in the RECORD.

There being no objection, the letter was ordered to be printed in the

RECORD, as follows:

Letter from Maya Fielder

My name is Maya Fielder and I am 9 years old. I live in Palo Alto,

California and I am in the 4th grade at Escondido School. When I was a

little baby my Mom found out she had

Parkinson's Disease. I was with my Mom, but I don't really remember when

the doctor told her she had a bad disease that gets worse and worse and

doesn't have a cure. I know that

now there are lots of things I can't do with my Mom and sometimes I feel

like I have to take care her instead of her taking care of me.

I learned that Parkinson's Disease is when your brain doesn't produce

enough dopamine. Dopamine is important because it tells your body how to

move. My Mom's body tremors

and she can't write things down or if she does no on can read it, not

even her. She gets disabled to walk so she rides my scooter around the

house (I'm not allowed to ride in the house

though). And sometimes she can't even walk until her medicine starts

working so my Dad and I get things for her. She takes tons of pills

every day but the medicine or the disease

causes more problems for her so my Mom tries new medicines and different

things a lot to try to get better.

Our whole family works hard to help find a cure for Parkinson's. My mom

talks about Parkinson's to the newspapers or on the news whenever she

can and sometimes my name or

picture is shown too! We had a charity art show at our house and Uncle

Dan's art raised a lot of money. I even sold a painting and all the

money went to Parkinson's research. My

mom said that if researchers got enough money from Congress and from

regular people that scientists could find a cure in 5 or 10 years. That

would be good because I won't be a

grown-up yet and my Mom will get better and we could go iceskating

together.

But now we have a big problem. I heard President Bush say that all

cloning research has to stop. My Mom was really upset because she said

the President and some people in

Congress want to stop researchers from finding a cure for Parkinson's

and lots of other diseases that make millions of people sick. I don't

get it. One part of the Pledge of Allegiance

says " Liberty and Justice for all''. I don't think the government is

giving us much liberty or justice--at all!

People are scared of the kind of cloning that would make new people

(reproductive cloning). But what's so scary about finding a cure for my

Mom? That kind of cloning is called

therapeutic cloning and doesn't make people or kittens or anything like

that--it would just help my Mom's brain work again like it is supposed

to.

I think that the people who make the laws should make rules so

scientists won't do bad things with research. But can't they still be

allowed to do the good research? My mom said the

Brownback bill that is being voted on Congress soon wouldn't allow

scientists to do the good kind of research that would help her. She also

said that this law wants to put people like

her in jail if they try to get cured. That's just dumb! My Mom isn't

doing anything wrong by just trying to get well.

I thought I might want to be a scientist when I grow up but I don't

think so any more. I just want to find a cure for my Mom. I guess I'll

become the President of the United States so

that I can make good laws that help people and cure diseases. I'll let

scientists do their work and make all kinds of new discoveries.

I know that this isn't the most important thing for everyone. But I

think that if someone in your family was sick and you were worried, that

you would do everything you could to help

them get better. You wouldn't make laws so that a cure would not be

found and you wouldn't put them in jail. Please help find a cure for my

Mom and everyone else that needs one

instead of making it harder. I'm doing as much as I can do to help my

Mom and other people too (when I'm not in school or doing sports or

playing violin, but Mommy says that helps

her too). This is really important to a lot of people.

Thank you.

[Guest guest]

WOW! Thanks for sharing

Marilyn

[Guest guest]

Maya's letter brought tears to my eyes! Maya, if you ever get to read

this... Thank You from the bottom of my heart!

Deborah Setzer aka Tenacity

Maya Fielder's letter with recorded statement by Senator Harkin

Mr. HARKIN: Mr. President, today I chaired a hearing on Parkinson's

Disease in the Labor, Health and Human Services and Education

Appropriations Subcommittee. I was

profoundly touched by the victims of this disease who came to testify

and by the many, many victims, families and advocates who came to

Washington to put a human face on this

horrible disease. As a Congress, we can't take the time to listen to

every story but I ask unanimous consent that one little girl's story be

printed in the RECORD.

There being no objection, the letter was ordered to be printed in the

RECORD, as follows:

Letter from Maya Fielder

My name is Maya Fielder and I am 9 years old. I live in Palo Alto,

California and I am in the 4th grade at Escondido School. When I was a

little baby my Mom found out she had

Parkinson's Disease. I was with my Mom, but I don't really remember when

the doctor told her she had a bad disease that gets worse and worse and

doesn't have a cure. I know that

now there are lots of things I can't do with my Mom and sometimes I feel

like I have to take care her instead of her taking care of me.

I learned that Parkinson's Disease is when your brain doesn't produce

enough dopamine. Dopamine is important because it tells your body how to

move. My Mom's body tremors

and she can't write things down or if she does no on can read it, not

even her. She gets disabled to walk so she rides my scooter around the

house (I'm not allowed to ride in the house

though). And sometimes she can't even walk until her medicine starts

working so my Dad and I get things for her. She takes tons of pills

every day but the medicine or the disease

causes more problems for her so my Mom tries new medicines and different

things a lot to try to get better.

Our whole family works hard to help find a cure for Parkinson's. My mom

talks about Parkinson's to the newspapers or on the news whenever she

can and sometimes my name or

picture is shown too! We had a charity art show at our house and Uncle

Dan's art raised a lot of money. I even sold a painting and all the

money went to Parkinson's research. My

mom said that if researchers got enough money from Congress and from

regular people that scientists could find a cure in 5 or 10 years. That

would be good because I won't be a

grown-up yet and my Mom will get better and we could go iceskating

together.

But now we have a big problem. I heard President Bush say that all

cloning research has to stop. My Mom was really upset because she said

the President and some people in

Congress want to stop researchers from finding a cure for Parkinson's

and lots of other diseases that make millions of people sick. I don't

get it. One part of the Pledge of Allegiance

says " Liberty and Justice for all''. I don't think the government is

giving us much liberty or justice--at all!

People are scared of the kind of cloning that would make new people

(reproductive cloning). But what's so scary about finding a cure for my

Mom? That kind of cloning is called

therapeutic cloning and doesn't make people or kittens or anything like

that--it would just help my Mom's brain work again like it is supposed

to.

I think that the people who make the laws should make rules so

scientists won't do bad things with research. But can't they still be

allowed to do the good research? My mom said the

Brownback bill that is being voted on Congress soon wouldn't allow

scientists to do the good kind of research that would help her. She also

said that this law wants to put people like

her in jail if they try to get cured. That's just dumb! My Mom isn't

doing anything wrong by just trying to get well.

I thought I might want to be a scientist when I grow up but I don't

think so any more. I just want to find a cure for my Mom. I guess I'll

become the President of the United States so

that I can make good laws that help people and cure diseases. I'll let

scientists do their work and make all kinds of new discoveries.

I know that this isn't the most important thing for everyone. But I

think that if someone in your family was sick and you were worried, that

you would do everything you could to help

them get better. You wouldn't make laws so that a cure would not be

found and you wouldn't put them in jail. Please help find a cure for my

Mom and everyone else that needs one

instead of making it harder. I'm doing as much as I can do to help my

Mom and other people too (when I'm not in school or doing sports or

playing violin, but Mommy says that helps

her too). This is really important to a lot of people.

Thank you.

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