Re: - JRA Walk/ok Stacia!!

[Guest guest]

this was one of the most honest and touching things I have ever read!

You should be so very proud of yourself! And Rob should be incredibly proud

of you

[Guest guest]

Well, Stacia, your poem and 's and all the other prolific writers

here put me to shame, but you asked for it, ya got it!! Here goes:

My name is Schulz. At age 12, my son was diagnosed with

juvenile ankylosing spondylitis, which is a form of juvenile rheumatoid

arthritis. Initially, it affected his hips, and for a period of a few

months he was unable to walk. Fortunately, with medications, he has

improved, but we have yet to get his disease fully into remission.

A typical reaction from strangers when told a child has arthritis is " oh,

they’re too young to have arthritis " , or " that just causes aches and

pains " . They don’t understand that juvenile arthritis, since it starts at

such an early age, can inflict serious joint damage and loss of function.

Over 300,000 chldren in this country have some form of arthritis or

related diseases. In my son’s case, his particular form of arthritis is

having an effect on his lungs and kidneys. Young children with the

systemic form can face life-threatening complications. Some children have

associated eye disease which endangers their sight.

This disease makes our children feel so old when they are so young. The

newer drugs that have become available have helped many children, but are

not without the potential for serious side effects. That is why it is so

important for events like this to be successful, not only to raise

awareness, but to raise money for the continuation of research.

I asked parents of children with arthritis to express some thoughts I

might share with you today about parenting a child with arthritis:

From a mother of an 8 year old with systemic arthritis and iritis, which

is inflammation of the eyes:

" When I see my son running around the house rough-housing, (when he is

not in a flare), I pause, and instead of telling him to stop, I am so

thankful that he actually CAN rough-house " .

From a mother of a 17 year old with pauci-articular arthritis and

juvenile ankylosing spondylitis, diagnosed at age 13:

" I feel so badly for all the little ones dealing with this disease The

teen years are tough too, going through adolescence and arthritis at the

same time. I guess at any age, this disease stinks! "

From a mom of a 6 year old, diagnosed with systemic arthritis at age 3,

and hospitalized 3 different times for organ involvement:

" When he was asked at age 5 how long he’s had arthritis, he responded

‘since I was born’. I had to correct him and tell him that he was three.

My heart sank when I realized that he has no memory of not having

arthritis - no memory of not taking several medications daily. How sad is

that! But last night, he brought a ziplock baggie out of his room with

the money he has been saving for the walk, saying he needs to give, not

just collect. Recently after the Juvenile Arthritis Awareness day in our

area, he said it was more important to find a cure for arthritis than it

was for us to get a new computer, for which we’ve been saving for 2

years. "

My own son, who is now 15, and I are proud to be a part of the Arthritis

Walk today. It is our hope that our efforts today and in the future will

help find a cure, so that our brave, courageous children can have

brighter, pain-free tomorrows!

I also want to say publicly that , you are my hero.

Thank you.

On Sun, 23 May 2004 22:32:29 -0000 " staciar101 " <staciar@...>

writes:

,

Are you going to share your speech with the list??? Don't be shy,

we'd love to hear it. Congrats on completing your walk and raising

a bunch of money.

Stacia and Hunter,8,systemic,iritis

[Guest guest]

Beautiful speech . Well put - all of it. Thanks for saying all of

these things so others can understand. Michele (17, pauci &

spondy)

Re: - JRA Walk/ok Stacia!!

Well, Stacia, your poem and 's and all the other prolific writers

here put me to shame, but you asked for it, ya got it!! Here goes:

My name is Schulz. At age 12, my son was diagnosed with

juvenile ankylosing spondylitis, which is a form of juvenile rheumatoid

arthritis. Initially, it affected his hips, and for a period of a few

months he was unable to walk. Fortunately, with medications, he has

improved, but we have yet to get his disease fully into remission. A

typical reaction from strangers when told a child has arthritis is " oh,

they're too young to have arthritis " , or " that just causes aches and

pains " . They don't understand that juvenile arthritis, since it starts

at such an early age, can inflict serious joint damage and loss of

function. Over 300,000 chldren in this country have some form of

arthritis or related diseases. In my son's case, his particular form of

arthritis is having an effect on his lungs and kidneys. Young children

with the systemic form can face life-threatening complications. Some

children have associated eye disease which endangers their sight. This

disease makes our children feel so old when they are so young. The newer

drugs that have become available have helped many children, but are not

without the potential for serious side effects. That is why it is so

important for events like this to be successful, not only to raise

awareness, but to raise money for the continuation of research. I asked

parents of children with arthritis to express some thoughts I might

share with you today about parenting a child with arthritis:

From a mother of an 8 year old with systemic arthritis and iritis, which

is inflammation of the eyes:

" When I see my son running around the house rough-housing, (when he is

not in a flare), I pause, and instead of telling him to stop, I am so

thankful that he actually CAN rough-house " . From a mother of a 17 year

old with pauci-articular arthritis and juvenile ankylosing spondylitis,

diagnosed at age 13:

" I feel so badly for all the little ones dealing with this disease The

teen years are tough too, going through adolescence and arthritis at the

same time. I guess at any age, this disease stinks! " From a mom of a 6

year old, diagnosed with systemic arthritis at age 3, and hospitalized 3

different times for organ involvement: " When he was asked at age 5 how

long he's had arthritis, he responded 'since I was born'. I had to

correct him and tell him that he was three. My heart sank when I

realized that he has no memory of not having arthritis - no memory of

not taking several medications daily. How sad is that! But last night,

he brought a ziplock baggie out of his room with the money he has been

saving for the walk, saying he needs to give, not just collect. Recently

after the Juvenile Arthritis Awareness day in our area, he said it was

more important to find a cure for arthritis than it was for us to get a

new computer, for which we've been saving for 2 years. " My own son, who

is now 15, and I are proud to be a part of the Arthritis Walk today. It

is our hope that our efforts today and in the future will help find a

cure, so that our brave, courageous children can have brighter,

pain-free tomorrows! I also want to say publicly that , you are my

hero. Thank you.

On Sun, 23 May 2004 22:32:29 -0000 " staciar101 " <staciar@...>

writes:

,

Are you going to share your speech with the list??? Don't be shy,

we'd love to hear it. Congrats on completing your walk and raising

a bunch of money.

Stacia and Hunter,8,systemic,iritis

[Guest guest]

,

That brought tears to my eyes.Great job.

Love

Becki and 5 systemic

[Guest guest]

Thanks for sharing . That was beautifully written!!

Stacia