Hi Everyone.

  A good friend of my daughter is very sick and needs an expensive treatment. Sarah is a Freshman in High School and is an honor student, volleyball player, lacross player and softball player as well as a wonderful friend to my daughter. You can read a letter from her Mom below as well as a letter from Sarah that she posted on facebook. I am posting 2 links for fundraisers. The first is through tupperware sales and the second accepts direct donations.



Hello friends and family,

As many of you have guessed (from the pics last week of her MRI outfit), there has been some things going on here with our daughter Sarah. It has taken us the rest of last week to notify immediate family and have some processing time here ourselves. Early in the summer Sarah was presenting with an onset of symptoms that I thought was dehydration at first. Then those symptoms began to change and she developed tics. Sarah was slapping her hands, stomping her feet, having blank staring spells, and her head would snap to the side....all of which became so intense they were causing her pain. Then phonic tics began. She was screaming and barking.

In July I took her to a local hospital that is supposed to be one of the best teaching hospitals in the area...let us just say that we have left this university hospital and will NOT be returning. Their care was negligent and I had a dr look me in the face and lie to me twice in one appt! (our last appt). Their care plan consisted of mainly the "lets wait a year and see" approach. They told me that Sarah met all the requirements of Tourettes, except that she has not had the tics for a year. When I asked how a 14 yr old develops this disorder out of the blue, I was informed that she probably had tics most of her life and that I just missed them. "Yes, Im sorry...in her 14 yrs on this planet I never looked at my child." Grrr....off to dr number 2.

We have had a whole new experience. Our second neurologist has ordered blood-work as well as an MR with and without contrast. (which I begged for for months at the previous office). He also told me within 10 minutes of our appt starting that she did not have Tourettes because she had a definite acute onset of symptoms and we had very good history of how things have progressed. Last wed Sarah had her MRI and we went directly to his office to examine the images together and reach a diagnosis.

The good news is that Sarah has no tumors, cysts, or MS. A seizure disorder was also ruled out. Unfortunately that means we have also ruled out all illnesses except Autoimmune encephalitis. The dumb down version is that at some point earlier this year Sarah must have had a strep virus or bacterial infection that never presented itself, but rather it has altered her immune system and is causing her immune system to attach her brain. Yes folks, you read that right...she is attacking her own brain. Another unfortunate fact is that the treatments recommended for her are extremely expensive...roughly $50K each from what we have been told so far. Each treatment also requires the blood from 50+ donors. Oh, and these treatments are once a month until...well until we are told we can stop. 


Here is Sarahs post from facebook

Hi, my name is Sarah. I have Autoimmune Encephalitis, but that doesn't mean I'm a different person. Yes I am that kid making weird noises in class, and no I can't control it. I'm not contagious and if you ask, I will answer questions you have. I am willing to joke and have fun about it, but someways it becomes stressful to handle. I know I am missing a lot of school, but not by choice. Hi I'm Sarah, and I'm still a human being.


If you can help by buying some tupperware or by making a donation please do. I am not much for sentiment but this is breaking my heart. I can assure you this is not a scam and I know this young woman personally.1 more thing on the donation link you can send a digital "hug" which is a way to send her a message. If you decide to do that (it will only cost you the time it takes to write the messageyou do not have to make a donation) just mention you are a friend of the Balesters and please mention where you are from. For kids her age it is a big deal to hear from people all over the world.

Here are the 2 links

http://order.tupperware.com/pls/htprod_www/home

http://www.giveforward.com/forsarahiloveyou?utm_source=facebook&utm_medium=fb_wall&utm_campaign=vanity_page&og_action=hug&fb_ref=389472

1 more thing on the donation link you can send a digital "hug" which is a way to send her a message. If you decide to do that (it will only cost you the time it takes to write the message) just mention you are a friend of the Balesters and please mention where you are from. For kids her age it is a big deal to hear from people all over the world.