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

498 0 0

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.

  • Bobo

    $15 coming your way, take care of that beautiful little girl. Chive on!!!

  • Scythe

    Wow, the chive, truly the best site in the world❤

  • Animal

    Best $20 I've spent in a long time. Good luck little girl.

  • Ken

    Thankful that the Chive gives us an opportunity to help. Using power for a good purpose. Chive on!!

  • Excal

    GODDAMIT, WHO'S CUTTING ONIONS IN MY ROOM

  • Vincent

    Dear Chive,

    I am a long-time follower of the Chive–never posted, just enjoyed the site. I think it is great what you are doing–very proud to be a supporter and I commend you for the effort you put forth. I will donate after I write this. Then i will fix my next vodka soda.

    V from Austin, TX

  • 6KJR

    My prayers and thoughts go out to your family.

  • http://vimeo.com/user349849/videos FizorZed

    Good work, Chive. You have officially gone from 'probably' the best to 'the' best site ever. Donation complete. Now send that Donkey full of cash North of the border pronto.

  • Nikkix26

    I've never posted before, and I've definitely never cried from a Chive post before.. But this has touched me so deeply to know that there are so many generous people out there who will help someone who they don't even know. This proves how awesome our Chivers really are, and how selfless people can be. Chive on!:)

  • Joe

    Please make sure that Lilli's hero Sid gets something special. He is amazing and special kid for helping like that.

  • http://www.facebook.com/profile.php?id=1654449324 Ryan Smith

    smiling!!!!!!!!!!!

  • Brock C.

    She needs our help, everyone empty your wallets. My $100 is going to a good cause.

  • Jaden

    CHIVE ON

  • DanglingPP

    always had respect for parents like that. donated

  • habschick

    Wow they live 3 hours away from me here in Sudbury.. Must say I've never heard of this disease before. I hope that things go better for Lilli an her family. I hope to see photos of her new room posted soon

  • Shadow Ryder

    I usually try to keep my donations close to home but this little girl hit me right in the heart. Sending you $150 as the tears in my eyes make it hard to see the screen. We're thinking about you down here in MN, thank you fellow chiver's for stepping up when asked. I'm proud to be one of you.

  • steve

    I KNOW eh

  • Henri Fourie

    Good luck Lilli, the world is not all misery and there are an overwelming amount of people with good hearts. You have my Euro's!!!
    Chive on from France

  • steve

    oh my kid is dying, can i has money too?

    • KingMoe777

      fucking troll. get a life, loser

  • CC101

    This just touches my heart so much that Chive helps out those in need who would never be able to find it anywhere else. God Bless you Chive, the people who donated, and especially God bless Brandi, Lilli, and the rest of your family. Many prayers are sent your way ♥

  • thesensibleone

    Whats the point of donating now ? Close it. Are you gonna make them millionaires now ? They got enough for the little girl ,anything else will end up being wasted i believe. Help but dont spoil.

  • http://www.facebook.com/profile.php?id=100000002013938 Roberto Barreiro

    had some euros burning in the paypal account, i think its was meant to be used to help Lilli:)
    Good Luck😀

  • unreal_vector

    It's these families that deserve all the wealth in the world… not sport stars, celebrities, politicians, etc. This family should never have to work a day in their lives – they are already giving so much just to make their daughter's life one worth living to the fullest.

    I've made my donation… have you?

  • http://www.facebook.com/Luispedrosato Luis Pedro Gonçalves

    Just started to cry in the office, got more people to donate

  • KingMoe777

    thank you, captain asshole. now go die in a fire and do the world a favor

1 12 13 14 15
blog comments powered by Disqus
X
X