Re: Story from Minnesota Paper and response to the story

[Guest guest]

Thanks for sharing this.

However, I am quite dismayed at Ms. Brix's theory (horribly false) that

" The connection we have formed is not possible with someone of average

height " when she speaks of her upcoming wedding with another LP.

I have been with my average height husband for almost 20 years and we

are recognized by all who know us as " a perfect couple. " More than one

person has told us that when they meet their Mr. or Ms. Right that they

hope to be as happy as we are. We certainly wish that for those we

love.

I'm so sorry she has such a narrow view of AP/LP relationships - sounds

almost as narrow as the view she was responding to. Hmmmm.

-marty (the lady one)

>>> Beale <martinbeale70@...> 11/6/2007 10:32 AM >>>

Hello everyone,

With news of Shirley Barty passing away, I've been thinking a lot

about the community of people of short stature -- a community which the

Barty's played such a significant role in nurturing. Whether we are

members of Little People of America or not, I am glad that we have this

large, connected community of support.

I am particularly thankful for the community after I read stories

that underscore some of the barriers we have to face in our lives. One

such story came out a few weeks ago in a weekly Minnesota newspaper

called the WhiteBear News. The writer questioned people of short

stature who choose to have children. While it's very disheartening to

read these stories, the critical response to the story has been very

empowering. A number of people have responded to the paper, submitting

letters for publication. What's really great is that at least one of

the respondants is not a person of short stature and has little

connection to the community.

Below, I am pasting the original article and one of the responses.

The response below is from Theresa Brix, an lp from Minnesota.

thanks,

gary arnold

Don*t roll the dice with genetics

Just a Thought

Oct 23, 2007 - 08:50:07 CDT.

by e Goodrich

Staff Writer

As I sat in front of the tube, I found myself thinking: " You

sentenced your child to this life of pain. "

On a recent rainy Sunday afternoon, I curled up on the couch and tuned

into The Learning Channel for a re-run of " Little People Big World. "

I'm not a big fan of reality TV, but this looked a little more

thought-provoking than those other programs with rich teens whining

about their love lives.

The show chronicles the Roloff family of Oregon, which consists of two

parents who are little people, a son who is a little person, and three

other children who are average size.

The introduction says something to the effect that they want to show

they are a regular family. Indeed, they appear to fight and laugh like

any other family. But their differences extend well beyond their short

stature.

This particular episode showed a son, the one with dwarfism, in a

hospital bed in serious pain after undergoing surgery to help ease what

had been ongoing pain due to deformities in his leg. The dad tells the

camera he sympathizes with his son because he went through many such

surgeries in his youth.

Why, I wondered, did this dad and his wife decide to have children

knowing there was a good chance they would share their mutation and

their pain?

Rolling the dice with genetics is every bit as reprehensible as a

pregnant woman continuing to enjoy happy hour and praying between chugs

that her baby doesn't come out with fetal alcohol syndrome.

Maybe it wouldn't be so disturbing if dwarfism was simply an aesthetic

disease or caused only manageable health problems * after all,

adversity makes us stronger. But according to the Little People's

Research Fund, dwarfism causes deformities that can lead to breathing

difficulties, paralysis and even death.

I've heard people justify their genetics gamble as " God's will. " But

God gave us free will * the right to make our own choices, including

whether or not to procreate.

Unfortunately, sometimes the innocent become victims of those choices

* such as children who have to live with FES.

And sometimes we can't know the result of our choices * such as the

husband and wife who had no way of knowing they were carrying genes that

caused their child's health problem. Sure God could step in an help

(occasionally he does and we call it a miracle), but if he made it a

frequent habit, we'd lose our free will.

Having children is a choice. It's irresponsible and selfish to have a

child if you can't financially and emotionally support him. It's also

contemptible to produce a child who you know would likely suffer

significantly and quite possibly even die prematurely.

Meanwhile, according to the U.S. Department of Health and Human

Services, in 2005 (the most current data available), 115,000 foster care

children were waiting to be adopted. Who knows how many millions more

across the globe who also need a home.

Share your love with one of those children. Instead of bringing another

child into this world to suffer, help a child who already is suffering.

e Goodrich can be reached at 651-407-1233 or

whitebearnews@....

The following letter will be published in the next edition of the

paper:

Rolling the Dice with Genetics: The Real Life Story

By Theresa L. Brix

I am writing in response to the article, *Don*t role the dice

with genetics,* published in the White Bear Press on October 24th,

2008. After watching one episode of *Little People, Big World* on

TLC, e Goodrich felt she had enough knowledge to decide that

those with genetic predispositions should refrain from procreation,

particularly those with dwarfism because their children may

*suffer.* My thought is, give me one person who has been

brought into this world and hasn*t suffered. She made many false

accusations I feel must be addressed based on my first hand

experiences.

Many people know me as Theresa Brix, graduate of White Bear Lake High

School, alumni of the College of St. Scholastica, Junior Scientist at

the University of Minnesota, aspiring graduate student for the Molecular

Biology PhD program, and bride-to-be in July of 2008. However, some

people cannot look past my dwarfism (achondroplasia) as I stand 4*1*

tall.

Both of my parents are average height, as well as my brother and

sister. My dwarfism was caused by two point mutations at specific sites

on the FGFR3 gene causing abnormal bone growth. Generally,

achondroplastic dwarfs have shortened limbs, large heads, and certain

facial characteristics. Life span and intelligence are typically not

affected.

My fiancé, Matt, comes from parents who both have achondroplasia (the

most common type of dwarfism). He inherited that same mutation as a

dominant achondroplastic gene from one of his parents. Matt has two

biological sisters: one is also a dwarf (Aa) and the other is average

height (aa). Since both of Matt*s parents are heterozygous dwarfs (Aa

x Aa), his average height sister did not receive the gene. (A=dominant,

a=recessive)

Matt and I met on a little people*s dating website and now look

forward to our wedding. The connection we have formed is not possible

with someone of average height. We are able to encourage and support

each other as we encounter similar daily trials.

There are many challenges that we face, however, there are as many

solutions to adapt our environments. We use extension pedals to drive

our cars, stools to access anything out of reach, and sewing machines to

alter our clothes. Many people have sinks, light switches, or benches

lowered for ease of reach, while others raise the floor since appliances

are not easily modified.

The most difficult challenge Matt and I will face is the risk that

our child may inherit the dominant gene from both of us (AA). They

essentially receive a *double dose,* and will not survive much past

infancy. We*ve discussed that possibility with the professionals, and

we*re convinced that we will be the ones that suffer most, not our

child.

While some people may think we are being selfish and cruel, I don*t

feel it*s fair to judge.

Ms. Goodrich stated that, *[it is] contemptible to produce a child

who you know would likely suffer significantly.* One of the most

difficult situations my child will encounter will be similar to what I

am dealing with currently concerning Ms. Goodrich's article. There are

not enough surgeries available that will cause more pain & suffering

than the superficial judgment we receive from our own society.

I feel it is an honor to be different and have the opportunity to

teach those who are ignorant (like Ms. Goodrich) that differences are

what give the world breadth of character. The children Matt and I bring

into this world may not be what society considers perfect, but they will

have the emotional support, mental capacity, and respect for human kind

to teach this world that it is ok to be different.

__________________________________________________

[Guest guest]

I think LPA should issue a statement as well.

Wouldn't it be nice if our organization took up this fight too? Rather Than

worry about

offending people?

We rightfully hail (and benefit) from The Roloff family's TV show.

Why not defend LPA and all LP's from bigoted journalists such as this woman.

I hope one day she or a member of her family isn't diagnosed with a disease such

as MS or

Parkinsons that could cause pain, suffering and death as well. I hope she's

never in an

accident? Just because we can predict what happens in a womb doesn't mean

everyone

should terminate their dream to have a child.

If someone whose " perfect " child (Whatever that is) was suddendly injured or

dformed in

an accident, would this writer advocate for terminating that life as well? The

list can go on

and on...

IMHO

People like her should be the folks not procreating.

Story from Minnesota Paper and response to the story

dwarfism

> Hello everyone,

>

> With news of Shirley Barty passing away, I've been thinking a lot

> about the community of people of short stature -- a community which

> the Barty's played such a significant role in nurturing. Whether

> we are members of Little People of America or not, I am glad that

> we have this large, connected community of support.

>

> I am particularly thankful for the community after I read stories

> that underscore some of the barriers we have to face in our lives.

> One such story came out a few weeks ago in a weekly Minnesota

> newspaper called the WhiteBear News. The writer questioned people

> of short stature who choose to have children. While it's very

> disheartening to read these stories, the critical response to the

> story has been very empowering. A number of people have responded

> to the paper, submitting letters for publication. What's really

> great is that at least one of the respondants is not a person of

> short stature and has little connection to the community.

>

> Below, I am pasting the original article and one of the

> responses. The response below is from Theresa Brix, an lp from

> Minnesota.

> thanks,

>

> gary arnold

>

> Don’t roll the dice with genetics

> Just a Thought

> Oct 23, 2007 - 08:50:07 CDT.

> by e Goodrich

> Staff Writer

> As I sat in front of the tube, I found myself thinking: " You

> sentenced your child to this life of pain. "

>

> On a recent rainy Sunday afternoon, I curled up on the couch and

> tuned into The Learning Channel for a re-run of " Little People Big

> World. "

> I'm not a big fan of reality TV, but this looked a little more

> thought-provoking than those other programs with rich teens whining

> about their love lives.

>

> The show chronicles the Roloff family of Oregon, which consists of

> two parents who are little people, a son who is a little person,

> and three other children who are average size.

>

> The introduction says something to the effect that they want to

> show they are a regular family. Indeed, they appear to fight and

> laugh like any other family. But their differences extend well

> beyond their short stature.

> This particular episode showed a son, the one with dwarfism, in a

> hospital bed in serious pain after undergoing surgery to help ease

> what had been ongoing pain due to deformities in his leg. The dad

> tells the camera he sympathizes with his son because he went

> through many such surgeries in his youth.

>

> Why, I wondered, did this dad and his wife decide to have children

> knowing there was a good chance they would share their mutation and

> their pain?

>

> Rolling the dice with genetics is every bit as reprehensible as a

> pregnant woman continuing to enjoy happy hour and praying between

> chugs that her baby doesn't come out with fetal alcohol syndrome.

>

> Maybe it wouldn't be so disturbing if dwarfism was simply an

> aesthetic disease or caused only manageable health problems — after

> all, adversity makes us stronger. But according to the Little

> People's Research Fund, dwarfism causes deformities that can lead

> to breathing difficulties, paralysis and even death.

>

> I've heard people justify their genetics gamble as " God's will. "

> But God gave us free will — the right to make our own choices,

> including whether or not to procreate.

> Unfortunately, sometimes the innocent become victims of those

> choices — such as children who have to live with FES.

>

> And sometimes we can't know the result of our choices — such as the

> husband and wife who had no way of knowing they were carrying genes

> that caused their child's health problem. Sure God could step in an

> help (occasionally he does and we call it a miracle), but if he

> made it a frequent habit, we'd lose our free will.

>

> Having children is a choice. It's irresponsible and selfish to have

> a child if you can't financially and emotionally support him. It's

> also contemptible to produce a child who you know would likely

> suffer significantly and quite possibly even die prematurely.

>

> Meanwhile, according to the U.S. Department of Health and Human

> Services, in 2005 (the most current data available), 115,000 foster

> care children were waiting to be adopted. Who knows how many

> millions more across the globe who also need a home.

>

> Share your love with one of those children. Instead of bringing

> another child into this world to suffer, help a child who already

> is suffering.

>

>

> e Goodrich can be reached at 651-407-1233 or

> whitebearnews@....

> The following letter will be published in the next edition of the

> paper:

> Rolling the Dice with Genetics: The Real Life Story

> By Theresa L. Brix

>

> I am writing in response to the article, “Don’t role the dice

> with genetics,” published in the White Bear Press on October 24th,

> 2008. After watching one episode of “Little People, Big World” on

> TLC, e Goodrich felt she had enough knowledge to decide that

> those with genetic predispositions should refrain from procreation,

> particularly those with dwarfism because their children may

> “suffer.” My thought is, give me one person who has been brought

> into this world and hasn’t suffered. She made many false

> accusations I feel must be addressed based on my first hand

> experiences.

> Many people know me as Theresa Brix, graduate of White Bear Lake

> High School, alumni of the College of St. Scholastica, Junior

> Scientist at the University of Minnesota, aspiring graduate student

> for the Molecular Biology PhD program, and bride-to-be in July of

> 2008. However, some people cannot look past my dwarfism

> (achondroplasia) as I stand 4’1” tall.

>

> Both of my parents are average height, as well as my brother and

> sister. My dwarfism was caused by two point mutations at specific

> sites on the FGFR3 gene causing abnormal bone growth. Generally,

> achondroplastic dwarfs have shortened limbs, large heads, and

> certain facial characteristics. Life span and intelligence are

> typically not affected.

>

> My fiancé, Matt, comes from parents who both have achondroplasia

> (the most common type of dwarfism). He inherited that same

> mutation as a dominant achondroplastic gene from one of his

> parents. Matt has two biological sisters: one is also a dwarf (Aa)

> and the other is average height (aa). Since both of Matt’s parents

> are heterozygous dwarfs (Aa x Aa), his average height sister did

> not receive the gene. (A=dominant, a=recessive)

>

> Matt and I met on a little people’s dating website and now look

> forward to our wedding. The connection we have formed is not

> possible with someone of average height. We are able to encourage

> and support each other as we encounter similar daily trials.

>

> There are many challenges that we face, however, there are as

> many solutions to adapt our environments. We use extension pedals

> to drive our cars, stools to access anything out of reach, and

> sewing machines to alter our clothes. Many people have sinks,

> light switches, or benches lowered for ease of reach, while others

> raise the floor since appliances are not easily modified.

>

> The most difficult challenge Matt and I will face is the risk

> that our child may inherit the dominant gene from both of us (AA).

> They essentially receive a “double dose,” and will not survive much

> past infancy. We’ve discussed that possibility with the

> professionals, and we’re convinced that we will be the ones that

> suffer most, not our child.

> While some people may think we are being selfish and cruel, I

> don’t feel it’s fair to judge.

>

> Ms. Goodrich stated that, “[it is] contemptible to produce a

> child who you know would likely suffer significantly.” One of the

> most difficult situations my child will encounter will be similar

> to what I am dealing with currently concerning Ms. Goodrich's

> article. There are not enough surgeries available that will cause

> more pain & suffering than the superficial judgment we receive from

> our own society.

>

> I feel it is an honor to be different and have the opportunity to

> teach those who are ignorant (like Ms. Goodrich) that differences

> are what give the world breadth of character. The children Matt

> and I bring into this world may not be what society considers

> perfect, but they will have the emotional support, mental capacity,

> and respect for human kind to teach this world that it is ok to be

> different.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

> Don’t roll the dice with genetics

> Just a Thought

> Oct 23, 2007 - 08:50:07 CDT.

> by e Goodrich

> Why, I wondered, did this dad and his wife decide to have children

> knowing there was a good chance they would share their mutation and

> their pain?

---------------------

Surely there are two camps of thought on this issue?

One, the happy married dwarf couple, who take the view it is their God given

right to reproduce, (as it is with every couple) and to produce children

like themselves (as it is with any couple).

Two, the happy married dwarf couple who have looked at the odds and decided

that there is no way on this earth they are going to be extremely selfish

and procreat children who will go through the self same physical problems as

they have and will go through.

With the Roloffs, being of two different types of dwarfism, the dice was

presumably being thrown against them. Again, depending on WHAT sort of

family they wanted.

However, what DID come out in one episode, and it is obvious really, is the

fact that even their children who don't have dwarfism still carry the genes

and can, when they marry, produce dwarf children for all both partners are

probably of average height.

So, in a sense, what the Roloffs did was decide, not only for themselves

what sort of children THEY wanted, but also the influence their decision

would have on future generations.

It isn't a cut and dried discussion. To me, both camps have a right to have

their decisions respected.

Personally, Lin and I made a decision, and to this day, I am not sure if it

was the right one.

Fred

[Guest guest]

Below is the letter that I submitted in response to the story.

gary arnold

Let it ride

While it is easy to shrug off the discriminatory words of a newspaper writer,

many people of short stature and other people with disabilities watch anxiously

as scientific developments make possible a world that can be found between the

lines of staff writer’s e Goodrich’s recent article, (Don’t roll the dice

with genetics, October 23, 2007). In her piece, while watching the program

“Little People, Big World,” Goodrich asks of Matt and Amy Roloff “Why . . . did

this dad and his wife decide to have children knowing there was a good chance

they would share their mutation and pain?” With technology making it easier to

determine pregnancies, prospective parents all to soon may be forced to answer

that question before giving birth.

Five years after I was born, my mother became pregnant with my younger

brother. During her pregnancy, she’d field questions such as, “Aren’t you

worried you will give birth to another dwarf.” While my mother knew the chances

of conceiving a second child of short stature were very minimal, she’d answer,

“I’ll take another .” She knew that the world she and my father could

provide would be stronger than any physical, medical, or social barriers that a

little person, or any other child, would have to face. Similarly, the Roloffs

knew they were equipped to provide their children with the tools to live a good

life, whether their children were little people or average size.

Thankfully, for my mother, and for the Roloffs, the decision to have children

did, and still does, lie in the hands of parents.

Shows like “Little People, Big World,” and other efforts to portray people of

short stature as full participants in, and valuable contributors to, our

communities, play a significant role in breaking down misconceptions about

difference and disability. Hopefully, as technology moves forward, and

decisions about parenting become more complex, these efforts will help us focus

our attention on eliminating prejudice rather than eliminating diversity.

Arnold

Vice President of Public Relations

Little People of America

tonysoares@... wrote:

I think LPA should issue a statement as well.

Wouldn't it be nice if our organization took up this fight too? Rather Than

worry about

offending people?

We rightfully hail (and benefit) from The Roloff family's TV show.

Why not defend LPA and all LP's from bigoted journalists such as this woman.

I hope one day she or a member of her family isn't diagnosed with a disease such

as MS or

Parkinsons that could cause pain, suffering and death as well. I hope she's

never in an

accident? Just because we can predict what happens in a womb doesn't mean

everyone

should terminate their dream to have a child.

If someone whose " perfect " child (Whatever that is) was suddendly injured or

dformed in

an accident, would this writer advocate for terminating that life as well? The

list can go on

and on...

IMHO

People like her should be the folks not procreating.

__________________________________________________

[Guest guest]

>>>>and valuable contributors to, our communities

Other than DRUNK DRIVING of course!

Re: Story from Minnesota Paper and response to the story

Below is the letter that I submitted in response to the story.

gary arnold

Let it ride

While it is easy to shrug off the discriminatory words of a newspaper writer,

many people of short stature and other people with disabilities watch anxiously

as scientific developments make possible a world that can be found between the

lines of staff writer's e Goodrich's recent article, (Don't roll the dice

with genetics, October 23, 2007). In her piece, while watching the program

" Little People, Big World, " Goodrich asks of Matt and Amy Roloff " Why . . . did

this dad and his wife decide to have children knowing there was a good chance

they would share their mutation and pain? " With technology making it easier to

determine pregnancies, prospective parents all to soon may be forced to answer

that question before giving birth.

Five years after I was born, my mother became pregnant with my younger

brother. During her pregnancy, she'd field questions such as, " Aren't you

worried you will give birth to another dwarf. " While my mother knew the chances

of conceiving a second child of short stature were very minimal, she'd answer,

" I'll take another . " She knew that the world she and my father could

provide would be stronger than any physical, medical, or social barriers that a

little person, or any other child, would have to face. Similarly, the Roloffs

knew they were equipped to provide their children with the tools to live a good

life, whether their children were little people or average size.

Thankfully, for my mother, and for the Roloffs, the decision to have children

did, and still does, lie in the hands of parents.

Shows like " Little People, Big World, " and other efforts to portray people of

short stature as full participants in, and valuable contributors to, our

communities, play a significant role in breaking down misconceptions about

difference and disability. Hopefully, as technology moves forward, and

decisions about parenting become more complex, these efforts will help us focus

our attention on eliminating prejudice rather than eliminating diversity.

Arnold

Vice President of Public Relations

Little People of America

tonysoares@... wrote:

I think LPA should issue a statement as well.

Wouldn't it be nice if our organization took up this fight too? Rather Than

worry about

offending people?

We rightfully hail (and benefit) from The Roloff family's TV show.

Why not defend LPA and all LP's from bigoted journalists such as this woman.

I hope one day she or a member of her family isn't diagnosed with a disease such

as MS or

Parkinsons that could cause pain, suffering and death as well. I hope she's

never in an

accident? Just because we can predict what happens in a womb doesn't mean

everyone

should terminate their dream to have a child.

If someone whose " perfect " child (Whatever that is) was suddendly injured or

dformed in

an accident, would this writer advocate for terminating that life as well? The

list can go on

and on...

IMHO

People like her should be the folks not procreating.

__________________________________________________

[Guest guest]

I agree with you completely, ~ I ran into this when I had my LP baby, 19

years ago.

The pressure was ON for me to give her up for adoption, but I said absolutely

NOT~

I had another 2 year old daughter, and my husband and I thought the sun rose and

set on her. What if something dreadful happened to her? Would we just throw her

away, just like that, and never look back? Our baby had Kniest,a more serious

type of dwarfism.

We just felt these sorts of problems happened to our child NOW, that's all. We

were going to take her home and deal with them as they came.

It just blows my mind when I see little babies on tv with cleft palates, who are

left to be adopted! That was the least of our worries! We had that, and more!

It broke my heart one day, when my lp daughter was in the 4th grade or so, and

we were alone in the car, and she turned to me and said, " I think Grandma would

give me up, if I weren't perfect, don't you? " I had to turn my head and look out

the side window for awhile. I didn't know what to say, because the truth was,

she was right.

I told Amy she was probably right, but Grandma would have made a giant mistake!

I'll never forget that.

Anyway, Tony, I agree with you!

Take care,

Patty

Story from Minnesota Paper and response to the story

dwarfism <mailto:dwarfism >

> Hello everyone,

>

> With news of Shirley Barty passing away, I've been thinking a lot

> about the community of people of short stature -- a community which

> the Barty's played such a significant role in nurturing. Whether

> we are members of Little People of America or not, I am glad that

> we have this large, connected community of support.

>

> I am particularly thankful for the community after I read stories

> that underscore some of the barriers we have to face in our lives.

> One such story came out a few weeks ago in a weekly Minnesota

> newspaper called the WhiteBear News. The writer questioned people

> of short stature who choose to have children. While it's very

> disheartening to read these stories, the critical response to the

> story has been very empowering. A number of people have responded

> to the paper, submitting letters for publication. What's really

> great is that at least one of the respondants is not a person of

> short stature and has little connection to the community.

>

> Below, I am pasting the original article and one of the

> responses. The response below is from Theresa Brix, an lp from

> Minnesota.

> thanks,

>

> gary arnold

>

> Don’t roll the dice with genetics

> Just a Thought

> Oct 23, 2007 - 08:50:07 CDT.

> by e Goodrich

> Staff Writer

> As I sat in front of the tube, I found myself thinking: " You

> sentenced your child to this life of pain. "

>

> On a recent rainy Sunday afternoon, I curled up on the couch and

> tuned into The Learning Channel for a re-run of " Little People Big

> World. "

> I'm not a big fan of reality TV, but this looked a little more

> thought-provoking than those other programs with rich teens whining

> about their love lives.

>

> The show chronicles the Roloff family of Oregon, which consists of

> two parents who are little people, a son who is a little person,

> and three other children who are average size.

>

> The introduction says something to the effect that they want to

> show they are a regular family. Indeed, they appear to fight and

> laugh like any other family. But their differences extend well

> beyond their short stature.

> This particular episode showed a son, the one with dwarfism, in a

> hospital bed in serious pain after undergoing surgery to help ease

> what had been ongoing pain due to deformities in his leg. The dad

> tells the camera he sympathizes with his son because he went

> through many such surgeries in his youth.

>

> Why, I wondered, did this dad and his wife decide to have children

> knowing there was a good chance they would share their mutation and

> their pain?

>

> Rolling the dice with genetics is every bit as reprehensible as a

> pregnant woman continuing to enjoy happy hour and praying between

> chugs that her baby doesn't come out with fetal alcohol syndrome.

>

> Maybe it wouldn't be so disturbing if dwarfism was simply an

> aesthetic disease or caused only manageable health problems — after

> all, adversity makes us stronger. But according to the Little

> People's Research Fund, dwarfism causes deformities that can lead

> to breathing difficulties, paralysis and even death.

>

> I've heard people justify their genetics gamble as " God's will. "

> But God gave us free will — the right to make our own choices,

> including whether or not to procreate.

> Unfortunately, sometimes the innocent become victims of those

> choices — such as children who have to live with FES.

>

> And sometimes we can't know the result of our choices — such as the

> husband and wife who had no way of knowing they were carrying genes

> that caused their child's health problem. Sure God could step in an

> help (occasionally he does and we call it a miracle), but if he

> made it a frequent habit, we'd lose our free will.

>

> Having children is a choice. It's irresponsible and selfish to have

> a child if you can't financially and emotionally support him. It's

> also contemptible to produce a child who you know would likely

> suffer significantly and quite possibly even die prematurely.

>

> Meanwhile, according to the U.S. Department of Health and Human

> Services, in 2005 (the most current data available), 115,000 foster

> care children were waiting to be adopted. Who knows how many

> millions more across the globe who also need a home.

>

> Share your love with one of those children. Instead of bringing

> another child into this world to suffer, help a child who already

> is suffering.

>

>

> e Goodrich can be reached at 651-407-1233 or

> whitebearnews@...<mailto:whitebearnews@...>.

> The following letter will be published in the next edition of the

> paper:

> Rolling the Dice with Genetics: The Real Life Story

> By Theresa L. Brix

>

> I am writing in response to the article, “Don’t role the dice

> with genetics,” published in the White Bear Press on October 24th,

> 2008. After watching one episode of “Little People, Big World” on

> TLC, e Goodrich felt she had enough knowledge to decide that

> those with genetic predispositions should refrain from procreation,

> particularly those with dwarfism because their children may

> “suffer.” My thought is, give me one person who has been brought

> into this world and hasn’t suffered. She made many false

> accusations I feel must be addressed based on my first hand

> experiences.

> Many people know me as Theresa Brix, graduate of White Bear Lake

> High School, alumni of the College of St. Scholastica, Junior

> Scientist at the University of Minnesota, aspiring graduate student

> for the Molecular Biology PhD program, and bride-to-be in July of

> 2008. However, some people cannot look past my dwarfism

> (achondroplasia) as I stand 4’1” tall.

>

> Both of my parents are average height, as well as my brother and

> sister. My dwarfism was caused by two point mutations at specific

> sites on the FGFR3 gene causing abnormal bone growth. Generally,

> achondroplastic dwarfs have shortened limbs, large heads, and

> certain facial characteristics. Life span and intelligence are

> typically not affected.

>

> My fiancé, Matt, comes from parents who both have achondroplasia

> (the most common type of dwarfism). He inherited that same

> mutation as a dominant achondroplastic gene from one of his

> parents. Matt has two biological sisters: one is also a dwarf (Aa)

> and the other is average height (aa). Since both of Matt’s parents

> are heterozygous dwarfs (Aa x Aa), his average height sister did

> not receive the gene. (A=dominant, a=recessive)

>

> Matt and I met on a little people’s dating website and now look

> forward to our wedding. The connection we have formed is not

> possible with someone of average height. We are able to encourage

> and support each other as we encounter similar daily trials.

>

> There are many challenges that we face, however, there are as

> many solutions to adapt our environments. We use extension pedals

> to drive our cars, stools to access anything out of reach, and

> sewing machines to alter our clothes. Many people have sinks,

> light switches, or benches lowered for ease of reach, while others

> raise the floor since appliances are not easily modified.

>

> The most difficult challenge Matt and I will face is the risk

> that our child may inherit the dominant gene from both of us (AA).

> They essentially receive a “double dose,” and will not survive much

> past infancy. We’ve discussed that possibility with the

> professionals, and we’re convinced that we will be the ones that

> suffer most, not our child.

> While some people may think we are being selfish and cruel, I

> don’t feel it’s fair to judge.

>

> Ms. Goodrich stated that, “[it is] contemptible to produce a

> child who you know would likely suffer significantly.” One of the

> most difficult situations my child will encounter will be similar

> to what I am dealing with currently concerning Ms. Goodrich's

> article. There are not enough surgeries available that will cause

> more pain & suffering than the superficial judgment we receive from

> our own society.

>

> I feel it is an honor to be different and have the opportunity to

> teach those who are ignorant (like Ms. Goodrich) that differences

> are what give the world breadth of character. The children Matt

> and I bring into this world may not be what society considers

> perfect, but they will have the emotional support, mental capacity,

> and respect for human kind to teach this world that it is ok to be

> different.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Fred,

Well, you've done it again. You have managed to touch me. (No, not like

that!)-(shame on you)!

You and I have had many discussions on this very issue...I must say, it did not

even dawn on me that if Jarrod makes the decision to have children...his

children, albeit average height they may be, their children, his grandchildren,

may thereafter be SEMD...I only really thought of the next generation...never

the generations to come. It really is a far reaching genetic choice. In the

past I have been so adamant on defending Jarrod as a human being...Nothing truly

wrong with him after all, but would I have chosen that disorder, or the life he

has to live given the chance? No. Emphatically, I can truly and honestly say

that if I had the choice to have him with or without the dwarfism? I would have

chosen normalcy for him...meaning not that disorder...But what then? Would he

be who he is? No. I wouldn't have him at all. He is who he is because of what

he has dealt with. Knowing what I know now, I would not change a thing. He is

all I could ever

hope for in a son and I am so proud of him.

I guess what I am saying is...To have children is to deal with the unknown. We

can guess how they will come out and even have an educated guess as to their

condition-I mean, being average heighted, honestly I expected him to come out as

my other children, but he didn't...He came out as he is, and I have grown to

love that. He has always accepted it, as all of us do our lives...with it's ups

and downs. No one has a perfect life. We all think that this condition is

better than that one, and this person has it so much easier than that

one...Reality is we all have our own struggles and ailments...they are all hard

and even a parent who wants everything to be perfect for their child cannot

predict what things that child has to go through...so the question truly is...Is

Life worth it?

My argument remains that life is worth IT, whatever IT is. We learn nothing

from non existence.

As always Fred, I love you and how you cause me to think about such

philisophical topics. Thank you.

Willow

Re: Story from Minnesota Paper and response to the story

> Don¢t roll the dice with genetics

> Just a Thought

> Oct 23, 2007 - 08:50:07 CDT.

> by e Goodrich

> Why, I wondered, did this dad and his wife decide to have children

> knowing there was a good chance they would share their mutation and

> their pain?

---------------------

Surely there are two camps of thought on this issue?

One, the happy married dwarf couple, who take the view it is their God given

right to reproduce, (as it is with every couple) and to produce children

like themselves (as it is with any couple).

Two, the happy married dwarf couple who have looked at the odds and decided

that there is no way on this earth they are going to be extremely selfish

and procreat children who will go through the self same physical problems as

they have and will go through.

With the Roloffs, being of two different types of dwarfism, the dice was

presumably being thrown against them. Again, depending on WHAT sort of

family they wanted.

However, what DID come out in one episode, and it is obvious really, is the

fact that even their children who don't have dwarfism still carry the genes

and can, when they marry, produce dwarf children for all both partners are

probably of average height.

So, in a sense, what the Roloffs did was decide, not only for themselves

what sort of children THEY wanted, but also the influence their decision

would have on future generations.

It isn't a cut and dried discussion. To me, both camps have a right to have

their decisions respected.

Personally, Lin and I made a decision, and to this day, I am not sure if it

was the right one.

Fred

===

[Guest guest]

Some forms of dwarfism are recessive and some are dominant... It would not

necessarily be something seen in anycase...I am average height, with no dwarfism

in my family for generations uncounted and have a dwarf child. You don't see it

in me. Sometimes even siblings can produce a child with dwarfism, it totally

depends on the kind and how the gene is carried or if it is a spontaneous

mutation.

Just my take, once again,

Willow

Fw: Story from Minnesota Paper and response to the story

> Fred and All,

>

> I am having a problem with this statement:

>

> " However, what DID come out in one episode, and it is obvious really, is

> the

> fact that even their children who don't have dwarfism still carry the

> genes

> and can, when they marry, produce dwarf children for all both partners are

> probably of average height. "

>

> I don't understand this statement, unless it is because one is DD and the

> other achon. The doctors told me and my average size daughter that she

> would not produce a dwarf baby because she does not have the gene. The

> doctors said that if you see it you can produce it, meaning she is average

> and would produce average children

>

> Kathy.

>

>

===

[Guest guest]

Marty (the lady one) --

Thank you for this. It's nice to know I wasn't the only person who

picked up on this.

Theresa Brix did a wonderful response to Ms. Goodrich's ignorant

opinion piece. With her wonderful resume she is a great example that

being a person with dwarfism does not automatically guarantee a life

of pain, hardship and suffering. I also loved her acknowledgement on

how most folks won't see who we are because they can't see past what

we are.

However I did bristle when I read her comment " The connection we have

formed is not possible with someone of average height. We are able to

encourage and support each other as we encounter similar daily

trials. " My AP husband has offered me more encouragement and support

than anyone else in my life. Who would settle for anything less in a

spouse? I don't believe that inseam length is a precursor to empathy,

support and understanding of my experience.

I would never write that marrying AP is a better choice than marrying

LP. To begin, I don't have enough room in my inbox to deal with the

hate mail that I would receive. I didn't marry an LP man; I can't

make judgements on an experience that is not mine. But also, I didn't

marry an AP man per se. I married the man whom I love who

loves me back. And I'm sure that love is how LP/LP relationships are

formed as well.

Ignorance is hard to deal with no matter where it originates.

Rose

>

> Thanks for sharing this.

>

> However, I am quite dismayed at Ms. Brix's theory (horribly false)

that

> " The connection we have formed is not possible with someone of

average

> height " when she speaks of her upcoming wedding with another LP.

>

> I have been with my average height husband for almost 20 years and

we

> are recognized by all who know us as " a perfect couple. " More

than one

> person has told us that when they meet their Mr. or Ms. Right that

they

> hope to be as happy as we are. We certainly wish that for those we

> love.

>

> I'm so sorry she has such a narrow view of AP/LP relationships -

sounds

> almost as narrow as the view she was responding to. Hmmmm.

>

> -marty (the lady one)

[Guest guest]

Fred and I have had these discussions before as well.....

and I are AH parents of an achon son. It was a de novo mutation

and just " one of those things that happens " .

We have been members of LPNZ since was very little, and have

encouraged him to be and do what everyone else does - ie whatever he

wants. So, when it comes to dating, marrying and family, it will be

his choice (and his future wife) whether they have children or not.

I look at families we have within LPNZ - some have chosen to have

children, others have not (for whatever reason). And my thought is

that I'd like to have children if that's what he wants. I'm an

extremely maternal type person (only have 5 children though) and have

tried to bring my children up to enjoy being children and enjoy having

siblings, and to enjoy life. I admire those LP's who have chosen to

have children, because to me, they are comfortable in their skin and

have done what most other married couples do - and - why shouldn't they?

If marries another LP and they choose to have a family, I'll

support him 100%. If they choose not to, sure I'll be disappointed,

but still support them. He only has a 50% chance of passing on

achondroplasia, and if he does, I'm sure his children will be just as

beautiful as he is.

We all can have thing " different " about us - I have passed on severe

allergic rhinitis to one of my 5, all of them (except ) have

dairy issues from me, and 3 of them have had asthma from me. Should I

look back and say " OMG...look what I have inflicted my children with? "

- of course not - I've taught them to get on with life no matter what

it throws at you. It's all about choices and how you deal with them..

OK - I'll shut up now!!

Caela

New Zealand

[Guest guest]

Hello all,

I sent a private e-mail to the writer of the article

about my thoughts.

Basically from my pov, I explained that the hardest

thing about being a dwarf is not my pain or my height,

it is other people's attitude and ignorance. What

bothers me the most is not blatant rudeness, it's

other people assuming my life is a challenge, a

struggle, difficult, etc. I feel that when they take

those assumptions they are putting me out of the equal

category into the " special " category. It is not fair

and it is not right to assume what it is like to be

someone else. When I see a blind person or a deaf

person I do not assume their life is hard or take pity

on them, for what? Maybe they are happier in their

life than I am? What gives me the right to pass

judgement on their disability when I have no idea what

it is like? If a deaf person wants to have a child who

could be deaf, honestly, more power to them! I have no

right to pass judgement because only they know what it

is like and what the future holds in store for their

child. My mom was 3'2 and was highly encouraged not to

have kids. That was ashame because she always wanted a

baby. When she went in to have her tubes tied guess

what lil thing she found floating safely in her? Me!

woohoo I got in their at the nick of time! My grandma

and I had a discussion a few years back and she kind

of had the same sentiment, ya, believe me, I put a

stop to that and never again has she brought it up.

The only one that will have a say in my reproductive

rights is myself and my future husband.

I also explained to the writer that I would be

no matter what height I am. My likes and dislikes as

well as interests are not shaped by my height. It is

not like if I was tall I'd like country, if I was

tall, I would have been a math major, if I was tall I

would be an introvert, no way.

As far as Theresa, I agree with her. When you date an

lp it is easier in terms of things dwarf related. You

have someone who already understands what it is like,

you don't have to re-explain anything. I highly doubt

it was meant that lp/lp relationships are happier,

more successful, whatever. In the end you end up

marrying someone for who they are, not their height.

-

__________________________________________________