Emily is suffering from a terminal illness called Sanfilippo Syndrome. She will be 15yrs old in February. Life expectancy is mid teens to 20yrs old for her type. One of Em's meds that she's taken since she was 5yrs old has run out and it costs our family $1500, fully uncovered so it's all out of pocket. Emily's dad works very hard with the NYPD. Mom  works for the non profit, Team Sanfilippo Foundation,  while taking care of our house and Em's siblings. In addition to her Genistein, Em loves the pureed meals that come from, "Mom's Meals." She gets tube fed twice a day and then enjoys an oral dinner. While delicious and calorie dense like Em needs, they are very expensive. We are out of both Genistein and the meals. Em is always in need of Depends Overnights, size Medium. We do not use the ones that would come from Medicaid because they do not hold Em's urine or feces. We just came home from the doctor with a pressure sore in the diaper area today and we cannot use diapers that will leave that area wet and dirty. She needs the better brand that does not compromise her health. I talked to one of Em's doctors about her med running out and she agreed with me that Em really did need to continue and perhaps a GoFundMe would be a good place to turn to. I am now home after visiting the school to apply wound care on Em. My head and heart are full of a lot of thoughts....some happy, Em is still with us....some not so happy. Our girl is suffering right now. She's suffering from a sore, diapers are low, meds are out, and yummy meals gone. Overwhelming to say the least. All of these costs in addition to typical costs of raising kiddos and sometimes you just have to stop and reset.  We appreciate any and all help, even if just in the form of shares. We understand this is the holidays and money is tight everywhere. We could not time her meds running out, and we certainly did not want a pressure sore now, or ever for that matter. Unfortunately, Sanfilippo Syndrome does not answer to us. If you'd like to see more of Em, you can visit her Facebook page, https://www.facebook.com/Emilysdance/?ref=bookmarks   Thank you for taking the time to read our story xo