This is my friends post:  Everybit helps!!
Hello my name is Melissa Merrill. I've been married for 18 yrs and I have 3 children; Caitlin 17, Chelsea 16 and Cody 14. My 16 Year old daughter, Chelsea, was recently diagnosed with Lafora disease. Two Years ago she was diagnosed with JME (Juvenile Myoclonic Epilepsy). She has been having seizures since July 26, 2012 and the medication is not helping and we haven't been able to control the seizures. Chelsea also has jerking spells which would make her fall. She's fallen numerous times because of this. Chelsea has been to school only 3 times this school year because of the seizures and falling. Chelsea’s seizures would happen maybe once a week however recently they were happening everyday; sometimes more than once.

Chelsea at this point could not be left alone. I would need to always ensure I was with her. The seizures kept coming more and more frequent. Every seizure would set Chelsea back. Every seizure affected her motor skills.

The day before thanksgiving she had 9 seizures; 3 seizures at home, one in ambulance and 4 at Portsmouth Hospital and 1 going up to Maine Medical. She was admitted into ICU but Maine Medical couldn't do for her what Boston Children's Hospital could do. We’ve been at Boston Hospital for 2 weeks while they continue to find help for Chelsea. Due to the driving back and forth and hotel stays this has also had financial burden on my family. I truly appreciate anything you can do for Chelsea. The funds collected will be used for traveling expenses, ensuring Chelsea and the family has a good Holiday, food and other essentials needed for the family due to no income.

There's no cure for Lafora disease and it's fatal. Chelsea’s seizures are more severe and frequent now. She can't feed herself or get dressed; her motor skills are shot!

My husband’s been the one staying with her at night and I travel daily up there, so there's no income due to all of us being right there with her. It's a struggle getting by, but she's worth it.

Lafora causes dementia. Chelsea is beginning to not remember nurses and she would hit, yell at them, screaming n crying….. it's scary She needs 8 weeks at crotched mountain for rehab which is 2 hrs one way...I'm sad, angry because I can't seem to grasp "why her?" Chelsea’s time with us is limited. I won't see her get married, have kids and that deeply hurts. We want a cure. She has good days and bad days. I wish this was a horrible nightmare, a dream I could wake up from. Watching your child going through this…… words can’t describe. This once spunky, loveable, outgoing child is now a child that can't talk, get dressed, feed herself or even go to the bathroom without help. That's not the child that we knew before this started. Every parent needs to hug their kids and cherish your time with them because life is short and you don't know just how long you have with them. My time with Chelsea is limited.

Thank you so much,

The Merrill Family