PANDAS Fundraising Event success, must share

[amyjoy]

We are still completely recovering from the fundraising benefit my friends put together last weekend to raise money for DS14's IVIG, and awareness of PANDAS. It was an absolute success and completely restored my faith in the holiness of people and our shared humanity.

 

The community turned out en masse, I was and still am absolutely flabbergasted. We had at least 200 people come throughout the day, and over 70 auction items were donated from local businesses and people in the community that were moved by DS's story. We had entertainment the entire time, from local musicians and magicians, juggler, high school kids' rock bands, teen artists doing face painting, 4 tables spread with a magnificent bakesale and people were bidding and dancing, eating and painting and singing and it was joyous and shocking and nervewracking and amazing. We talked about PANDAS, i did a short presentation on it and we also had a corner with info and a laptop randomly playing pictures of PANDAS mixed with info about PANDAS.

 

Talking about PANDAS to a large group of people had me really thinking about distilling it down to its most fundamental aspect. I had everyone raise their hand if they had ever had a strep throat or knew someone that had a strep throat to start, and explained that that is exactly what happened to Lance,a strep throat gone haywire. I think it helped to normalize the process and the person, and to help people realize that this could be any of their children as well.

 

When we first got there, DS was afraid to get out of the car, that people would see him as a loser or a charity case. We had been preparing for this, for weeks, and it helped him to realize this is not just about him, that PANDAS is in this big gap of knowledge and insurance coverage, and that there are hundreds of other kids and families in our same position. That helped him, and then after a while, his friends went out to the car to hang out with him and eventually they brought him in, and he did great and was so appreciative of at least 30 kids or more, actually, probably 50, coming to support him and being really nice about it.

 

The other thing that helped incredibly was a mom and her DS13 with PANDAS driving all the way up to our little town from their home, like 3 hours away, for the event, to support my DS. And the way its turning out, these 2 children will be recieving the IVIG together, in my office on Tuesday and Wednesday of this week. They made a wonderful connection, both of them have tics and a similar manifestation of PANDAS, and this mom who made the journey is amazing and i was so honored to have them.

 

We raised over $6100 at that event, and with that and what we've been able to fundraise prior to the event, we have enough to treat DS14 with IVIG. Saying that i'm grateful is barely scratching the surface of how it feels.

 

SO, the ground has been broken. I hope in some way, this gives hope to any of you that need it and i'll be happy to support any efforts you find you have to make in this area.

 

Thanks

amy

[peglem]

That is so beautiful and amazing! You've had such a rough journey, but how wonderful knowing you have all that love and support! Prayers for you and all your supporters!

[thereishope]

If enough people haven't told you yet...you are an awesome Mom! Good luck with the upcoming IVIG.

[nicklemama]

I loved reading this story. Thanks for sharing and good luck w/ the IVIG!

[kimballot]

What a beautiful story!! Here's to a brighter tomorrow!

[norcalmom]

Congratulations!!! I am sooo happy for you and that Lance, and that has made a new "pandas" friend - they can support each other! You are an amazing person for making it happen.

[amyjoy]

Thank you all for kind words and wishes. And you know, while it looks like something amazing that i pulled off (oh, well, of course it is:) ) BUT I am 100% sure that any one of you would have done the same. Look how hard we must advocate for our children, just to get antibiotics, for heaven's sake. Its SO wrong. But in my heart I knew there was absolutely no way I was willing to let Lance's life go by, untreated. He is already 14 1/2, 6ft tall and has been sick for nearly 5 years. One more minute could make the difference of being an untreatable case, or a chronic case, better put. What WOULDN'T we do for our children??

[amy s]

Absolutely amazing! What wonderful community support!!! Thank you for what you are doing and I hope your son's IVIG goes perfectly.

[tpotter]

This is so great for you. I am really happy it is finally happening

[formedbrds]

Y

Edited January 16, 2011 by formedbrds

[Phasmid]

Wow, amazing. Congrats and best wishes for upcoming treatment! Thanks for sharing!!!!

[Priscilla]

Amazing Amy, not only did you get what your son needed, but you helped all of us in educating others and promoting awareness, the plight of many of us. Thank you so much for your time and effort- YOU ROCK!!!!!