charity
Our nephew, M, was diagnosed with APS Tpye 1 nearly two years ago.
I'll wait here while you go read about what that means.
M is an incredibly vibrant little fellow and his parents, K's sister S and her husband D, took it upon themselves to raise funds to begin medical research to help find a cure for their son's condition.
Yesterday, after weeks of tireless work, they threw an auction wherein donated goods were packaged in gift baskets and people bought raffle tickets for them.
People donated all kinds of wonderful items.
K's other sister's family donated a trip to Florida and each child put together a gift/donation.
Niece S donated three framed photographs she had taken (I just realized I should have bid on them! I love her photos), her sister put together a wonderful basket of scrapbooking materials and their little brother donated a sled with a stuffed animal.
There was a great outpouring of love and support from the community - local businesses gave cakes so refreshments could be served, and there were coupons for massages and haircuts and all manner of services.
There were 200 items being auctioned - mostly coupons or gift certificates and baskets of gifts.
As the rain poured down we all sat waiting.
It was hard wondering how many people would show up. And while the big room in the top floor of the fire house was often populated only by family, people did show up and gave generously.
And though there was definitely a crowd of people who go to these types of events every weekend, people who stayed to the bitter end to see if they won that basket of candles and books for their dollar ticket, most of the people who showed up showed up for the family.
Those people, like my aunt and uncle, bought a healthy amount of tickets, dropped them in random bags and went and hugged relatives.
There were so many moments where people off in a corner or at a table just had quiet words, lent prayers of support, or just looked into each others eyes and said nothing.
The whole family turned out.
Everyone worked so so hard.
I don't know where K's sister got the emotional or physical energy to get through half of what she's dealt with. I know she's not superhuman - I know these past weeks have drained her.
But yesterday was a great success on many levels.
And I was honored to be there.
Flyers were taped everywhere so that people understood more about APS.
I made this basket. I made lots of baskets. I still feel like I didn't do enough.
I could watch the money box well enough, but am unable to make change.
So. Many. Baskets.
I had the great pleasure of working for a while with this fellow. K's brother-in-law's brother-in-law. Funny as hell. Cute as a button. I enjoyed his company immensely.
There were some beautiful offerings and some that left me wondering, but there was SOMETHING FOR EVERYONE.
The faces of long gone firefighters watched over us all day.
The 50/50 ticket lady was a gem. As was the pal who spent the day in the fire house kitchen, as were the men who carried heavy tables, and the guy who kept running to the deli and the woman who worked for weeks on donations, and the woman who has known S for years and turned up at the very moment that our energy was fading and injected new life into all of us.
Miraculous things like that happened all day.
While we were loading everything into the firehouse a janitor was emptying the trash.
I was working away and he approached me and pressed a twenty dollar bill into my hand and said: here, start the auction off right.
I was standing in the rain with a sign on the side of the main road when a woman with two toddlers pulled over. I can't go to the auction, she said, will you take a donation?
She had one of the babies hand me a twenty.
Minutes later, another car pulled over near me. A woman ran from the car and gave me her umbrella.
Miracles are all around us....
Care to donate? Specify APS type 1.
I'll wait here while you go read about what that means.
M is an incredibly vibrant little fellow and his parents, K's sister S and her husband D, took it upon themselves to raise funds to begin medical research to help find a cure for their son's condition.
Yesterday, after weeks of tireless work, they threw an auction wherein donated goods were packaged in gift baskets and people bought raffle tickets for them.
People donated all kinds of wonderful items.
K's other sister's family donated a trip to Florida and each child put together a gift/donation.
Niece S donated three framed photographs she had taken (I just realized I should have bid on them! I love her photos), her sister put together a wonderful basket of scrapbooking materials and their little brother donated a sled with a stuffed animal.
There was a great outpouring of love and support from the community - local businesses gave cakes so refreshments could be served, and there were coupons for massages and haircuts and all manner of services.
There were 200 items being auctioned - mostly coupons or gift certificates and baskets of gifts.
As the rain poured down we all sat waiting.
It was hard wondering how many people would show up. And while the big room in the top floor of the fire house was often populated only by family, people did show up and gave generously.
And though there was definitely a crowd of people who go to these types of events every weekend, people who stayed to the bitter end to see if they won that basket of candles and books for their dollar ticket, most of the people who showed up showed up for the family.
Those people, like my aunt and uncle, bought a healthy amount of tickets, dropped them in random bags and went and hugged relatives.
There were so many moments where people off in a corner or at a table just had quiet words, lent prayers of support, or just looked into each others eyes and said nothing.
The whole family turned out.
Everyone worked so so hard.
I don't know where K's sister got the emotional or physical energy to get through half of what she's dealt with. I know she's not superhuman - I know these past weeks have drained her.
But yesterday was a great success on many levels.
And I was honored to be there.
Flyers were taped everywhere so that people understood more about APS.
I made this basket. I made lots of baskets. I still feel like I didn't do enough.
I could watch the money box well enough, but am unable to make change.
So. Many. Baskets.
I had the great pleasure of working for a while with this fellow. K's brother-in-law's brother-in-law. Funny as hell. Cute as a button. I enjoyed his company immensely.
There were some beautiful offerings and some that left me wondering, but there was SOMETHING FOR EVERYONE.
The faces of long gone firefighters watched over us all day.
The 50/50 ticket lady was a gem. As was the pal who spent the day in the fire house kitchen, as were the men who carried heavy tables, and the guy who kept running to the deli and the woman who worked for weeks on donations, and the woman who has known S for years and turned up at the very moment that our energy was fading and injected new life into all of us.
Miraculous things like that happened all day.
While we were loading everything into the firehouse a janitor was emptying the trash.
I was working away and he approached me and pressed a twenty dollar bill into my hand and said: here, start the auction off right.
I was standing in the rain with a sign on the side of the main road when a woman with two toddlers pulled over. I can't go to the auction, she said, will you take a donation?
She had one of the babies hand me a twenty.
Minutes later, another car pulled over near me. A woman ran from the car and gave me her umbrella.
Miracles are all around us....
Care to donate? Specify APS type 1.
Comments
I will say a little prayer for your nephew and your family.
I feel completely useless when I hear of rare diseases and especailly when children are involved.
If my prayer can help, I shall pray very hard for him.
No child should suffer, ever.
It's incredible how supportive a community can be in times like that. That night is still one of the most poignant in my life and I'll never forget it. My thoughts are with your nephew and your family and my thanks to responsive, caring communities everywhere.
I held it together until I saw your pic of the beautiful baskets that had obviously been made with so much love. Prayers will be said for the family.
That sky picture is beautiful.
I wish all the best for K's sister and her family.
I was thinking 'so many baskets' 'so much love' 'so much goodwill' then this:
here, start the auction off right
made me cry instant long lasting tears.
I have a friend with APS. It's not easy.
Hugs
I reread it this morning and found that wasn't the case. Still weepy.
You can usually count on family to assist, whether it's with a donation or a well timed hug.
Coming from strangers it just validates my faith in humanity in general.
Thanks for sharing that. I'll be thinking of them.
Beautiful cloud photo, by the way.
Off the subject (but I'm afraid I don't have a minute to find the right post) I smoke 1-2x/yr. And boy, oh boy, would I ever smoke more if thought i could get away with it! Especially those damn Export-A's.
Thank you for sharing this part of your life - your little nephew will be a part of our lives too now.
The internet is a very powerful tool for sharing information about rare medical disorders and I hope that his parents will find reason to be hopeful in the future.