Two days ago I set out on a journey from my parent's home in Ft. Wayne, Indiana to Sault Ste. Marie, Ontario to keep a promise I'd made to a very special Chivette. It all started months ago with a fundraiser for a little girl, Lilli Wilson, that went better than expected...
Lilli has Smith-Magenis Syndrome (SMS), a developmental and sensory disorder that affects the 17th chromosome. SMS causes intellectual disability, delayed development, sleep disturbance, and extreme behavioral problems. One of the more hellish aspects SMS is that Lilli is given to fits of prolonged 'meltdowns' that can last many hours. During these meltdowns, Lilli will inflict serious self-injury on herself. Lilli's mother Brandi was told that SMS was so rare, only 600 people worldwide had the disorder.
Just a few months ago, Lilli was sleeping in a regular bedroom. Every toy, door, and wall was a potential hazard. Children with SMS are often referred to as 'Little Houdinis'. The night Brandi contacted me Lilli had snuck out of her bedroom, crawled to the end of the hall, and flung herself down the stairs. The family was too poor to afford a custom made 'safe space' that would serve as both Lilli's bedroom and a place to keep Lilli safe from harm during her meltdowns.
The Wilson's needed the Chivers' help.
theCHIVE organized an online fundraiser. The goal was to raise $17,000 to for Safe Spaces in England to create a custom bedroom for Lilli to keep her safe from harm.
I remember that morning vividly. After launching the post, the donations began pouring in quickly. In fact, we hit our goal of $17,000 in less than an hour!
It was a great moment at theCHIVE offices. I updated Lilli post announcing we'd hit our goal and thanking the chivers for their overwhelming generosity. We cracked open mid-day Budweisers to celebrate, relax, and play video games. However, Mac the Intern continued to stare at his computer. After 10 minutes he finally spoke up,
"Guys, you should see this. The Chivers are still donating."
"I'm sure a few donations will continue to trickle in, Mac, let's play some Call of Duty."
"Guys, the donations are coming in even FASTER since we hit our goal."
What? We'd done it, the room was paid for, achievement unlocked. But the Chivers had simply refused to stop giving. Over the course of the next few hours we watched, collective jaws dropped, as the chivers blew past $25,000 then $30,000, When the dust finally settled on the day, the Chivers had donated $34,000 to Lilli. Unreal.
What would we do with the extra money raised? I set Brandi to task, she put together a list of every sensory toy Lilli would ever need. These custom toys are not only soothing to Lilli's senses but they also foster her development. But even after we ordered every sensory toy known to man, there was still money left over.
I immediately thought of Lilli's two amazing brothers, Sid and Jack. Sid and Jack are not your average 5 and 3 year olds. They are Lilli's guardians, watching over her every minute of the day. Two more selfless and caring children I have not met. They possess the wisdom not present in most adults. I thought Sid, Jack, and Lilli deserved a very special Christmas.
So I traveled to Sault Ste. Marie Canada because of you, because you refused to stop giving. Tonight, the Chivers have brought three deserving children the greatest christmas they've ever had.
This is your Christmas story...
- I called Lilli’s mom before leaving Fort Wayne.
- Welcome to Canada
- The night before I arrived, Lilli performed in her school’s annual Christmas pageant.
- SMS is really nothing like some mental disorders we’re more familiar with. Lilli was fully aware of the events happening around her. She comprehends everything we say. For example, I asked her what her favorite animal in a children’s book was and she said, “I show”, flipped through the pages, and pointed to the poodle. Lilli still prefers sign language. Also, Lilli just started walking on her own one week ago. Her progress has been truly amazing.
- When I first arrived, Sid showed me his favorite superhero, Ben 10. Ben 10 wears a very special watch that transforms him into an alien shape of his choosing to battle intergalagtic evil. Sid got a paper version of the watch in a Happy Meal at McDonald’s and had his mother lace it to his wrist with a shoe string. He was so happy. The real Ben 10 watch is the hottest toy in Canada right now and nobody can get their hands on it, sadly.
- I played Legos with the kids for a while. The two boys kept constant watch over their sister.
- And then someone appeared in the doorway….
- Sid and Jack were so happy to see Santa they cried
- We all know what Santa brings for the good boys and girls
- Lilli was so excited unwrapping her gifts, She would look me in the eye and sign ‘thank you’ repeatedly after every present. Yes, it was completely overwhelming.
- The Wilsons desperately needed a new computer I noticed. I mean, you gotta’ Chive properly.
- #31 We had so many presents, we seriously ran out of wrapping paper.
- One last gift for the boys…
- And I finally got to see the Safe Space the Chivers built for Lilli. It was spec-tacular.
- One of Lilli’s biggest presents was and amazing light consisting of over 200 individual fiberoptic light threads. Each thread is 8 feet long and changes colors constantly. We placed the lights above Lilli’s safe space. The roof is mesh and creates a soothing starry night for lilly to gaze at before she sleeps every night.
The kids went to bed early this evening, perfectly exhausted from playing all day. Somewhere in between the twilight and their dreams, they were smiling… because of you.
Merry Christmas, Chivers.
