Photo Web Site "The Chive" raises $17K in 2 hours for 3-year-old with Smith-Magenis Syndrome

[Amerigo Vespucci]

This is a TOUGH one to post while obeying the "4 paragraph rule" on DU. I encourage you to go to the link and read the whole thing. Short version, as I said, is that the Website raised $17K in 2 hours to help the family.

http://thechive.com/2011/06/28/a-chivette-needs-our-help-34-photos/

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 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.