On March 16,
2013 a Basket Raffle Fundraiser was held in my hometown to benefit the
Children's Interstitial Lung Disease (chILD) Foundation. The chILD Foundation is a non-profit organization founded in 2004 to accelerate research for pediatric
interstitial and diffuse lung diseases to improve the quality of life for
children suffering from a group of around 30 chILD diseases that affect a
child’s ability to breathe and supply oxygen to the body. Due to the rarity of
these diseases, lack of research, and lack of knowledge about these diseases,
there are no cures for many of these and the causes and prognoses are unknown.
If
you are reading this, you probably know that my daughter has a rare
lung disease. However, you may not know that the name of this disease
is neuroendocrine cell hyperplasia of infancy (NEHI). You probably also
didn't know that NEHI is a chILD disease
which was only recently classified, 2005 to be exact. Emma, like a
majority of children with this
disease, is required to be on oxygen 24 hours a day. This disease is so
rare that there are only an estimated 500 kids that have NEHI. 500 kids
(similar to the number of kids in a large high school) spread
out throughout the country and world that share this common bond. When
you connect with these people, even if not in person, even if only
through the internet, it's almost like finding a long lost cousin that
you didn't know you had.
Last
fall I decided to organize a basket raffle to benefit the chILD
Foundation. The decision was inspired by my desire to contribute to an
organization whose mission is to help find answers to diseases like the
one Emma has. Emma does not mind being on oxygen. She has had her
cannula since she was 10 months old, therefore to her it is just a part
of her life. In fact, if you ask her where her oxygen is, she will point
to the cannula on her cheeks. To me, it is sometimes difficult to face
the fact that this is not like a common cold that momma can fix with
some medicine or rest. This isn't an ear infection that will go away in a
couple of days. This is one condition that momma can't fix. While I
realize the amount raised in this event won't make a big impact on it's
own, it is something, and something is more than nothing. I got
connected with a contact from the organization who has been very
supportive and helpful throughout and I was off and running.
I
began my search for prizes by filling out online forms and emailing
companies requesting donations. The first "corporate" prize received in
the mail was from the Montshire Museum. The first "personal" prize was
received by my ex-sister-in-law. I was surprised early on by the great
prizes that were coming in. As I look back, I think my first "awe"
moment was when my daughters' daycare provider said that she was going
to make an afghan as a prize. I don't knit or crochet but my mother was
an avid quilter so I do appreciate the intricacies of this type of
skill. This was the first of many "wow, that is really nice" moments
I've experienced through this planning. Another of these was when I
received a facebook message from someone that lives in my Town, someone
that I didn't even know, with the following message:
"Hi Jenny, I would like to donate a basket for your raffle.
I want to make a family pack of hats.
2 adult hats and 2-3 kids hats, all hand-crocheted.
Where should I drop them off when they are finished?"
15
days later I picked up 5 hand-crocheted hats, neatly packed in a cute
little basket, at the local store/gas station/post office. "Wow" I
thought again. In the meantime I obviously appreciated all the prizes
coming in from family and friends and people that I had asked if they
could make a donation. But imagine, someone that doesn't even know me or
my family going out of their way to do this. Again, "wow, that is
really nice" I thought.
Meanwhile
my best friend is selling a large number of raffle tickets for me. My
mother-in-law is making numerous baskets for the raffle. A local
business gives three prizes after hearing about the raffle. We receive a
gift certificate to a local kids nature camp without any solicitation.
The list goes on.
The
response for prizes got to a point where we didn't need to worry any
more about having enough prizes. We even got an amazing grand prize
which was 4 one-day park hopper passes to Disney World which ended up
being a prize all on its' own. That was pretty exciting when I got news
of that. Another exciting moment was when we got two airline tickets.
I give credit to my sister-in-law for leaving me a voice mail one day
about a contact about the potential for that prize. Another great prize
was from a fishing club that my husband is a member of. We received so
much fishing tackle from them that we broke it up into 3 prizes. Another
couple in town donated a gallon of maple syrup, which they delivered to
my daycare because they were headed out to Florida the following day.
My goal was 50 prizes and the final total ended up being 80.
I
am paranoid by nature so once the prize situation was under control, my
next worry was whether people were actually going to attend. Another
worry was what to do for food. One week before the raffle I'm still
nervous about what to do for food at the event. Our daycare provider
comes to the rescue and talks to the local church group that she is a
part of and they hook us up with sandwiches, chips, and cookies. My
mother in law also assists in this by making 140 cookies.
Fast
forward to the morning of the event when we were getting ready at the
school and the mailman stops by. He comes in and tells my husband that
he has a package for me. He said that he noticed our cars were not at
home during his route and saw our vehicles at the school. He went on to
say that he thought the package might be something we needed for the
party. Keeping in mind that I know our mailman by name only, this was
pretty awesome of him to think about going out of his way to do this,
let alone actually going out of his way to do this. Another "wow"
moment.
As
mentioned, I was worried about what kind of turnout there would be. As
it turned out, that turned out to be great too. Our friend that lives 2
hours away came up, another family member 2 hours away attended, my
husband's coworker that lives 1 hour away shows up, several school staff
members, friends and family, my aunt that I haven't seen in years, and a
great turnout from the community. I love my small rural town with a
population of approximately 740. It was great to put a name to faces of
people that I see around Town.
One
day, less than a week away from the event, I decided to put together a
poster to post at the event to include information about chILD diseases.
As part of this I wanted to include a section titled "faces of
chILD" and have photos of kids with chILD diseases. In a matter of about
3 hours online I was able to find enough photos for my collage. Not all
of them had NEHI, but they all had a chILD disease. When you think
about it, it is really quite amazing that I was able to get permission
from enough parents of children with these rare diseases to use their
childs photo for my collage. All of these found in a small community on a
facebook page for parents of children with chILD diseases created by a
mother on a mission to connectto other chILD families. For these few
hours searching for photos for my collage, it felt like this disease was
not rare at all. I cannot put into words how therapeutic it feels to be
able to connect with these facebook "friends" that I don't even know
that share our journey.
Mission
complete. Everything turned out great and the total contribution for
the chILD Foundation will be $3,305. It was fun to hear people talking
about the prizes they wanted to win. Whether it was the 3 cubic yards of
crushed gravel, the Craftsmen tools bag, or the coveted Kindle Fire
prize, it seemed many had a "favorite". When the winning ticket
number for the autographed photo of Dustin Pedroia from the Boston Red
Sox was called out, the winner raised his hand and said, "Yes! This is
why I came hear today!" I thought that was great. I think everyone had a
great time, also important for a successful event.
When
I started organizing this raffle it was all about helping the chILD
Foundation (obvioulsy) and self-gratification to feel like I am
contributing. It turned out to be something so much more. I did not
anticipate the level of support that I received from people that I do
not have any personal connections with. Those family and friends that
supported and assisted and offered to help however needed is noticed and
appreciated as well. But when people go out of their way to do
something nice for you and you don't even know them, it is heartwarming
to know that these people are around and even more great to have these
new connections. The local support really reinforced what I already
knew, that I live in a great community surrounded by kind and generous
people.
Thank
you to everyone who made this event a success. Even if you are not
mentioned above, it does not mean your efforts have gone unnoticed. It
just means I ran out of time to mention your story.
