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I see that posted it looks like n will be having wedding news soon so

I thought I would let you know that our daughter is engaged to be married. They

are getting married on July 2, 2010. For those that don't know our story our

daughter was diagnosed with JRA after over 6 months of treatment for a knee

injury that occurred while dancing. She used to perform with a traveling group

doing ballet on pointe, modern, jazz and more. She danced with her school dance

team. Sadly JRA put an abrupt stop to that--she was taking 60 mg of Prednisone

and all kinds of other icky things to get through the Nutcracker and realized

her dance dreams were now over at the age of 14. She quickly ran through all the

meds available until she was able to enter a trial for Enbrel which was only

minimally successful. After ending up in a wheelchair she was switched to

Remicaid which was much more successful but still not great. Now she is on

Humira and it has been the best

for her.

Of course, it wasn't just that simple. We spent many days at the clinic, the ER,

having injections and emergency surgery. But through it all she has come through

it strong. She graduated with her AA from college days before graduating from

high school, she was able to play in Carnegie Hall (which we weren't sure would

happen because of her emergency surgery). And now she is teaching First Grade

full time after graduating from college. Teaching has turned out to be a great

field for her because it gives her flexibility to move around the room as

needed, etc. and she has guaranteed weekends (although as a first year teacher

she does go in to school on Saturdays at times) and holidays etc off.

I write this to give you hope if you are just starting on this journey. It may

not be an easy journey and your child may not go into remission (although I pray

they will--our daughter has not been that lucky) but they will succeed. Don't

hold them back and don't let them hold themselves back because of the disease. I

read through some of the emails I have saved and they made me cry remembering

those hard times but there have been great moments too. I wish you all hope, and

the best of tomorrows.

e, mom to " joe " 23 poly+

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