It’s been a year since our last update on Elisa. Unfortunately she has gotten worse. Her weight is around 80 lbs now. She tries so hard to communicate but makes mostly sounds and noises that make no sense. She gets aggravated and so do we. She stays in her bed all the time. If we try to take her out she gets so nervous and upset that she starts having seizures. Its Christmas time and we don’t even bother with the outside lights anymore. She used to get so excited to see them, now she doesn’t even care or realize. The only thing lately that has gotten her to smile is her new baby niece, Amelia. She was born Dec. 1st. We have pictures of her over Elisa’s bed and she stares at them and smiles. We had always hoped she would have a child one day but that will never be….

We have added to Elisa’s arsenal of drugs this year. She takes Keppra, Clonazepam, Zonisamide, folic acid, Acetazolamide, Generlac Solution and the latest is Zoloft. The Zoloft is to calm her anxiety. We are still doing the gentamicin every 3 months. I can’t say if it helps. I know she never gets sick; no colds or anything. That’s a plus because that’s what usually kills these kids.

We will be 11 years in March living with Lafora. Elisa is totally bed ridden but she is so strong that it is shocking! She can kick, punch and grab with tremendous force. She may not be accurate but it still hurts.

My only sanity saver is talking to the other Chelsea’s Hope parents and sharing information. I was just taking to Sheri Boatright, Jessica’s mom, the other day and discovered that both our girls always turn their heads to the right. I thought that was odd. Some of the more recent cases seem to be progressing at a quicker rate also. I don’t know if that’s true but the more I read that’s how it seems to me.

Our family life is very abnormal. We do everything around Elisa. We have no social life, but then neither does she. We do this by ourselves, our choice. The nurse comes once a month to clean her port but I have no nursing the rest of the time. One day sooner than later I am sure that will change.

We live one day at a time; there is nothing else we can do. We desperately hope for a cure within her lifetime. We are realistic though. We don’t want her like to live like this; we want her to have a quality life.

Lafora disease in my eyes is the most destructive, mean, selfish disease that I have ever encountered. It takes away everything, slowly, calculatingly, and maliciously. Dying quickly in my mind would be a blessing for these kids. They are being tortured.

Please donate and help us save the next generation if not this one.

Mari and Tom Brackin