Help Lilah beat autoimmune encephalitis!

IN A NUTSHELL:

Hi, my name is Rebekah, and this beautiful girl is my daughter, Lilah. 

 

Lilah has a potentially life-threatening condition called Autoimmune Encephalitis (basically an overactive immune response has caused parts of her brain to swell).  This condition affects, conservatively, 1 in 200 kids in the United States.

The treatment for this condition is an infusion of an immunosuppressive medication called Rituximab.  Unfortunately, the infusions are considered experimental and "off label", so insurance will not cover them.  Each treatment can cost upwards of $16,000, and she may need between 4 and 6 treatments. 

 

Right now, we are trying to raise $25,000 to help pay for the first couple of treatments.  

Anything you can give would be greatly appreciated.

 

 

If you want to know more about Autoimmune Encephalitis and Lilah's journey, please keep reading.

 

A little over ten years ago our girl contracted a series of strep infections that made her immune system go haywire.  As a result, her immune system attacked an area of her brain called the basal ganglia. The basal ganglia refers to a group of subcortical nuclei responsible primarily for motor control, as well as other roles such as motor learning, executive function, behaviors, and emotions. 

 

When her immune system attacked her brain, she developed a condition called autoimmune encephalitis (commonly known as PANDAS).  In essence, her brain became inflamed and this inflammation gets progressively worse as time goes on.  The inflammation causes things like learning disabilities, involuntary movements (called chorea - it looks like Parkinson's), severe anxiety, depression, anger management issues, disordered eating, obsessive compulsive disorder, and in some cases, death.

 

Click here to watch a video that explains the science surrounding autoimmune encephalitis better than we ever could.

 

We have been trying to get Lilah help with her condition for almost 11 years now.  However, for what seems like forever, the answer has been, "there's nothing we can do. This is your new normal." 

 

As we have watched Lilah sink deeper and deeper into debilitating depression - the answer has been "there's nothing we can do". 

As Lilah deals with sudden, involuntary movements, the answer has been "there's nothing we can do".   

As Lilah's disordered eating became so severe that she dropped 25 pounds in a month, the answer was "there's nothing we can do". 

As she continues to struggle in school, the answer has been "there's nothing we can do". 

Even after Lilah's multiple suicide attempts the answer was always "there's nothing we can do."  

 

Here is a video of how the involuntary movements looked when Lilah first got sick:

 

Here are before and after photos of a time when Lilah's disordered eating was really bad:

 

Autoimmune encephalitis is a sneaky condition. Sometimes it can lie dormant and lull you into a false sense of security - and you allow yourself to have hope.  Lilah goes through periods when she's doing great.  For example, Lilah has an incredible voice and performed with the School of Rock for a few years before autoimmune encephalitis made it impossible for her to continue.  Here is a video of Lilah in her element - when she used to sing at School of Rock - during a time when she was doing well:

 

 

These times are always short-lived, and the symptoms return.  Here is a video of her just this week when we had to pick her up from school because the involuntary movements started in the middle of English class.  Imagine being 17 and having this happen in front of your peers!

 

 

We have spent tens of thousands of dollars dealing with the various side effects of autoimmune encephalitis, but Lilah has only gotten progressively worse. We are scared to death of what will happen as she nears adulthood and continues to try and contend with all these problems. Even scarier, Lilah attempted suicide four times last year.  One way or another, people die from this condition. We feel like we are running out of time.

HOPE!!!

 

It's funny that at the darkest times, that's when light can shine the brightest. We have found hope. We recently learned that there are doctors who have developed viable treatment options for autoimmune encephalitis. 

 

Dr. Madeleine Cunningham who has done extensive research on the condition, is working with a neurologist in Washington DC, Dr. Elizabeth Latimer. 

 

Here's a link to Dr. Cunningham's organization - Moleculera Labs: https://www.moleculeralabs.com/

 

Through Dr. Cunningham's research, Dr. Latimer, has developed treatments which can reverse the brain inflammation. These treatments can help bring our girl back to us!

 

Unfortunately, the treatments are very expensive, and insurance doesn't cover a lot of it.  As a matter of fact, only 6 states mandate that insurance cover treatment for autoimmune encephalitis/PANDAS at all - and even with the mandates insurance often denies claims.  To get our girl the help she needs, we are going to have to pay out of pocket.

 

We have already spent about $40,000 in the last three years on medical care, psychiatric care, tutors, and learning disability programs. The treatment to reverse the effects of the brain inflammation may cost another $50,000 to $100,000. We just can't afford that. So, this is why we are creating this page. Please help Lilah be the person she was always meant to be. Smart, strong, independent, happy. Help our girl, and she will fill the world with beautiful music.

 

 

NOTE:  Any money not used for Lilah's care will be donated to the PANDAS Network (https://pandasnetwork.org/) so that they can continue their very important research and help more kids in the future.