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

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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  • Evan

    Very touching story. Sit tight, Lilli, big help is on the way 🙂

    #3, #18

    • Paul

      I bet this wan't on Redditt.

      Just one more reason I'm glad I Chive.

    • equalizermax

      Thank goodness to Canada's Health Plan. They're lucky they don't live here in 'merica…

    • TheBiffer

      Well that was the fastest donation I've ever made. No problem at all getting the wallet out for this family.

      I adore the story of, and pictures of, Sid taking care of Lilli. I also think it is amazing that Brandi manages to be an active Chive contributor, showing that even in the face of challenges like this she can maintain her sense of humor.

      • Lowrent75

        As a Husband and a father this story hits home. I am lucky enough to have three healthy kids and have no problem sending help their way. Excellent work.

  • Brooke

    My cousin has SMS, I'm literally shaking right now after reading this. It's the type of disorder that will draw an, 'oh no, not that one' when mentioned to a member of the medical community. I'm so proud the Chivers are rallying behind this sweet girl right now. From the bottom of my heart, CHIVE ON!!!

    #31, #27

    • jason_in_pc

      i only donate to individual charities after the 9/11 scandal from red cross.
      (you probbaly have never heard of them) – couldnt help sticking that in there..
      i hope that the chive sees that at least 90% of donations find there way to the cause. i understand there are costs involved but i have a serious issue with ppl and companies getting rich running donation companies.
      chive on, i am proud of you guys!

      • jason_in_pc

        and yes, im down for a 20

    • davisrj

      Sid you are the man!!!!

    • Paul

      I have a cousin with SMS too (he's now 19). I wonder how many cases there are world wide, 3 connected to the Chive so far…

      It is an absolute hellish disorder. So good to see so many people willing to help.

    • paul

      I have a cousin with SMS too (he's now 19). I wonder how many cases there are world wide. At least 3 connected to the Chive so far.

      Glad to see so many people willing to help.

    • http://www.facebook.com/paul.wieland Paul Wieland

      I have a cousin with SMS too (he's now 19). I wonder how many cases there are world wide. At least 3 connected to the Chive so far.

      Glad to see so many people willing to help.

  • David

    At #27, I pretty much lost it

    • bettingonthecubs

      lost it? hell i'm still trying to recover from it

    • SweetAwesomeness

      got to me early at #6…..Sid looks like hes going to be an awesome big brother to her for life!

    • BunkerPunk

      As a big brother… game over at #27, misty-eyed and punching myself in the throat. I am proud as fuck to be a Chiver! Donation sent.

      • TheBiffer

        Sid wins Brother of the Year!

  • MigraineBoy

    Goddammit. Hang in there, we'll do whatever it takes.

  • Lancer

    "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 out help. We're going to send the calvary to Sault Marie"

    you have my $10. Go get 'em, Chivers.

    • CosmoKramerTheAssMan

      Brought the damn house we did. Well done, everyone.

  • Peter Jacobs

    #31
    Donated. Hell yes, proud to be a Chiver

  • ImpressMe

    Being from Sault Ste. Marie, Michigan….just across the bridge from SSM Canada….this hits close to home…that and the fact it made me cry at work… .sending $$ for the itty bitty…. winters up there are brutal…shes gotta have a place to be safe and have fun.

    • Dan

      No way, I'm in Marquette. Chivin' in the U.P.

  • SitVisVobiscum

    God Bless theChive for helping this family! Chive on!

  • http://www.facebook.com/profile.php?id=1805668114 Dave Gogel

    i spend hundreds of dollars every year on crap i do not need. it was my pleasure to donate to this and put my paycheck to good use. chive on!

  • psykopengwin

    this is why I love The Chive….something this heartfelt right above "Animals being dicks"…..money donated, CHIVE ON!

  • StuScottsLeft Eye

    This post puts Burn your Bra Tuesday on the Back burner. Sid is an excellent brother and should get a little something something too!

    • http://twitter.com/erinwillett @erinwillett

      Sid is the man.

    • Matthew

      I was thinking this exactly, and scanned the comments to make sure nobody else said it before me. Raise the goal to $20 000, get Sid some cool shit and set up a college fund for him. The selfless are too rarely rewarded, and he's fucking five years old.

      • StuScottsLeft Eye

        Right on / Chive on! Great suggestion! #27

    • BananaBilly

      I was just thinking the same thing. He's a very good older brother and it's not easy having a sibling with a disablility. Do you think I could just send a toy or whatever for Sid to that mail address?

    • Todd

      No doubt, Sid is deserving, too. He's doing his part to take care of his sister! Glad to donate to this cause!

    • Marionpowder

      I agree too, maybe some cool stuff for his room and definitely a college fund. Lilli's care is always going to be expensive and it's important to make sure her selfless brother is going to be covered too!

  • Dave

    Just sent $5 Lilli. Money well spent.

  • CosmoKramerTheAssMan

    From a father of 3 kids to the parents of this little girl, $20 your way. Proud to be able to help out.

    Chive on.

    • Lilli's Mommy!

      Thank you so much!

  • Kaiser

    awesome 10 bucks

  • poppajo8

    God bless Lilli and her family, I will certainly keep them in my thoughts and prayers. As someone who is dealing with cancer and going through treatments without insurance, I can certainly empathize with their challenges. Thank God Lilli has two loving parents, relatives and Chivers who love her!

    • dick

      Thank a god who made her like that? retard

  • http://www.facebook.com/jeff.mullin Jeff Mullin

    Donated. Good work Chive.

    • http://www.facebook.com/jeff.mullin Jeff Mullin

      And good work Sid! Keep on being AWESOME.

  • KyleGamgee

    I have $3 in my Checking account right now so i can't. But I get paid on Friday and will put my drop in the bucket I assure you.

    • http://voyeur.posterous.com adam

      that's awesome man. well-played.

    • Josh

      I'm in the same boat. I'm actually currently overdrawn, but I will send whatever I can to help this family out as soon as possible. Proud as hell to be a Chiver, and of The Chive community. Well done, people. Well done.

    • Ness

      Me too. Thursday is a few more bucks coming from NC

    • pettinato

      $3 in all your checking account and still you find money to donate to help a person in need? If ever has a group of people given me hope its chivers

  • Steve

    I am very lucky to have two healthy girls of my own, hope my 5 dollars helps.

  • http://twitter.com/#!/gfeinberg86 GreyGhost9

    Made my eyes water at work, good work. you will be getting money from me!

  • Jeff

    just tried to donate and the page wont load. I'm taking that as a sign of heavy traffic which is sweet. You'll get my $5 sooner or later

    • Peter Jacobs

      loading now. amazing that theCHIVE can crush a DONATION site with goodwill. hell yes

  • Tony

    needs it more than I do right now. Donated

  • Jimbo

    Got $10 on it.

    • mrjiggyfly

      $10 as well

    • https://www.facebook.com/jon.sandy Jon Sandy

      Me too

  • tsukushi_

    Her smile makes me smile 🙂

  • Josh

    I just kicked in my 5$…. and if you think about it thats basically a latte from Starbucks .. big F'in Deal your one day of no coffee from Starbucks is a mere microcosm compared to this little ones plight.

  • aosux

    My wife and I are currently dealing with some isues with our 4 month old baby girl who is failure to thrive so I can only imagine what you might be going through emotionally. I will send as much as I can!

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