Hot Right Now: WARNING: Dangerous curves ahead (26 Photos)

A Chivette needs our help: Meet Lilli (34 Photos: WE EXCEEDED OUR GOAL!)

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A few months ago now, I was exchanging emails with Brandi Wilson, one of our more talented submitters of hilarious photos. Brandi, a Canadian mother of three from the tiny town of Sault Ste Marie, Ontario, broke down and told me a heartbreaking story about her 3 year-old daughter, Lilli.

After Lilli was born, it took 21 months of medical confusion and speculation for doctors to conclude Lilli had Smith-Magenis Syndrome (SMS), a developmental disorder that affects the 17th chromosome. SMS causes intellectual disability, delayed development, sleep disturbance, and extreme behavioral problems. At the time, Brandi was told that SMS was so rare, only 600 people worldwide had the disorder. There are very few support groups for SMS, none at all in Canada. The details of SMS are rather hellish.

Lilli was born with a heart defect that affects roughly 25% of kids with SMS. She wouldn't learn to walk or talk like the other kids. In fact, at 6 months old Lilli still resembled a newborn.

Lilli doesn't sleep like you and I. SMS causes an inverted melatonin level and wildly erratic sleep patters. Lilli wakes up at 2 am thinking it's time to start her day. During the afternoon, Lilli is sleepy and irritable. The adorable remedy for this is Sid, Lilli's 5 year-old brother, who will sit on the couch next to his sister; Lilli will instinctively curl up next to him and drift away while Sid selflessly lets Lilli sleep.

Now for the really rough stuff. Lilli is plagued with a number of sensory issues. Many kids with SMS have a reduced sensitivity to pain. SMS children have behavioral issues, temper tantrums, and prolonged 'meltdowns' that can last hours, sometimes days, in which they can inflict serious self-injury. Lilli will bite herself, bang her head against tables and walls, tear her hair out, and claw her own skin.

Children with SMS have earned the nickname 'Little Houdinis'. They have no sense of fear. Children with SMS have been known to jump out windows or wander into busy streets. A few days before Brandi contacted me, Lilli managed to open the door to her bedroom, crawl down the hallway, and throw herself down the stairs.

Since then, Brandi has been forced to lock Lilli in her room. Brandi painfully expressed, "I was locked in my room as a punishment. Lilli doesn't deserve that. Every time I lock that door, it hurts so much."

This is where we need our Chivers. Brandi and her husband Sid live on less than $25,000 a year. There's an amazing company in England called Safe Spaces that specializes in creating safe living and sleeping spaces for kids with special needs which is not covered by the Wilson's insurance. Safe Spaces the only company in the world that creates safe spaces specifically for Children with SMS, a special retrofitted room-within-a-room where Lilli will be safe from harm.

We're going to have engineers from Safe Spaces fly to Canada to build Lilli a Safe Space and I'm personally going to fly to Sault Ste Marie to bring you the images and help in whatever way I can. Our goal is to raise $17,000. The room itself is $14,000 but I'd like to fill the room with toys, lights, and clothes specially made for kids with sensory disorders.

While there's nothing wrong with those big name charities, the Chivers have always championed the underdog. There are those out there, equally deserving of our help, who suffer in silence. Right now there's a little girl with an obscure disorder on the outskirts of Ontario who needs our help. We're going to send the calvary to Sault Ste Marie to help Lilli, put a megaphone on this disease, and give Lilli and the SMS community the help they desperately need.

We've created a donation page for Lilli right here. If you have $5 languishing in your PayPal account, it's suddenly become the most awesome $5 ever (donation site also accepts credit cards). Give whatever you can, doesn't matter if it's a dollar. Chivers, we've knocked it out of the park before in Fluvanna County. It's time to step to the plate once again and show the world what we're made of. I'll be bringing you hourly updates on the total $ raised so check back.

Donate HERE.
Lillie's Facebook Support page HERE.
More about SMS and how to lend a hand at PRISMS.

UPDATE #1: $2,500 in 15 minutes flat!!! The Chivers have the accelerator smashed into the floor right now.
UPDATE #2: Half hour mark and we just blasted through $5,000
UPDATE #3: We just hit $10,000 in one hour. Holy Shit.
UPDATE #4: $15,000 in 90 minutes. Keep it going, we're almost there!!! FINAL PUSH

SUPER KICKASS UPDATE #5: Chivers, we JUST HIT OUR GOAL. $17,000 IN LESS THAN 2 HOURS. I just spoke to Brandi. She's in shock. This is unbelievable. I'm keeping the donation page open for anybody who wants to give. Lord knows they could use it.
UPDATE #6: Even though we hit our goal, the Chivers refuse to stop giving. We've now raised over $25,000 for Lilli. This is surreal.
UPDATE #7: The total has crested $34,000. We've doubled our goal.

Donate right here.

If you’d like to send Lilli a letter of support:
Lillian Wilson
C/O Brandi Wilson
79 Robin St.
Sault Ste. Marie ON
P6A 5Y4

If you don’t use Paypal or online credit cards, please send checks to:

Resignation Media
701 Ocean Front Walk #3
Venice, CA 90291

Make checks payable to Resignation Media and put “Lilli” in the memo. Thanks Chivers!

SUPER KICKASS UPDATE #5: Chivers, we JUST HIT OUR GOAL. $17,000 IN LESS THAN 2 HOURS. I just spoke to Brandi. She’s in shock. This is unbelievable. I’m keeping the donation page open for anybody who wants to give. Lord knows they could use it.

UPDATE #6: Even though we hit our goal, the Chivers refuse to stop giving. We’ve now raised over $25,000 for Lilli. This is surreal.

UPDATE #7: The total has crested $34,000. We’ve doubled our goal.

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  • Mike

    TheChive should be in office then my taxes would get put to use. He is me carrying my own wait. Donated!

  • Spleenforsoul

    I hope I'm not going to be too late. I'm on disability, don't get paid till the first of the month. Will surely donate as soon as the money is transferred to my account that day.

    • CosmoKramerTheAssMan

      You represent theChive well. Give of yourself, no matter what you can give.

  • http://www.facebook.com/Gingergreek Pani Booyah

    Rubb ish

  • hyperion.pantibiblon

    Good God ,I'm fuckin proud I'm a Chiver.A new nation (so speak). A nation with no borders.full of souls with good intentions.

  • Beth

    As a mother of a child with a rare genetic disorder, this is an amazing story to read. Everyone who contributed is amazing. God bless Lilli.

  • http://www.facebook.com/profile.php?id=717771106 Scott McGill

    Donation sent. Build that room twice as big!!!

  • LadyShamisen

    And don't forget to buy some toys for the other little one in the picture! I'm sure they'll also be a supportive sibling to Lilli.
    Well played Chivers!

  • RT Fan

    Made a small donation, great cause. Best of luck.

  • Anonymous

    Chivers are awesome🙂

  • jesica

    i totaly would but as it is im broke but way to go little one u can do it

  • GregS18348

    Glad to have given. One ant moves a pebble. Enough ants move a mountain.

    Chive on!

  • Rich M

    Lilli, I have donated a 25 $ to your fund. Tomorrow i will work for an hour for you, so you can get the support that you and your family needs.
    Bless you.

    Rich M.

  • Huat

    Honestly, i really feel sorry for the kid and the parents. But i also wouldnt ever like to live like that baby for the rest of my life, for me this would be a far more cruel fate than death. This kid will never be able to have a remotely normal life, nor will it find a place in society… Considering this, i cant understand how a parent can even think about dumping this fate on a kid.

    And for you people who think they have the moral high ground for supporting something like that:

    think about how many HUNDREDS of kids could be saved in third world countries with 25,000… But sure, most people are content when they donated 5 dollars and think they changed something. Ignorance is obviously bliss.

  • DaveK

    I told this story to a friend of mine that is a reporter for CTV news here in Northern Ontario and she did a story on it tonight. (June 30th)

    here is the link.
    http://northernontario.ctv.ca/saultstemarie/index

    PS: I sent this directly to John and Leo so I hope they see it too🙂

    Chive on Chivers!

    • dreamspy1

      I just watched the CTV story, the reason we are doing this is because we all feel a connection to each other. When I watched the story all I could think is "we are doing it because we love that little girl."

  • a_roberto_23@hotmail.com

    dude, the chive family is just… awsome. no words

  • Laura

    Gave my £5
    Just wondering… Is there anything Sid might like? Kids like him deserve rewarding. Ideas anyone?

  • http://www.facebook.com/timothy.kaul Timothy Kaul

    Just got paid today, hope you can still use a couple more bucks

  • Sue Acide

    I wish people like what would just do us all a favor and kill himself. Someone okay with murdering babies doesn’t deserve to live. You could also move to the third world country dedicate your life to helping kids, but I’m sure you’re just a hypocrite far too selfish to do something like that.

  • Geoff

    Chivers, first the Fluvanna County Rescue Squad and now this…

    Most definitely the best site in the world

  • Spanky

    Damn, cried my freakin eyes out

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    […] community on the internet and I’m setting the goal at $30,000. But we all know about your endearing tradition of smashing goals. Let’s help build Taylor his cabin, a place where he and his family can […]

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