UPDATE on Alli – Sept 24th

Although Alli still does not have use of her legs and continues to have an average of 13 full body non-epileptic seizures a day, there have been a few aspects of positive momentum as we begin to secure our team of Functional Neurological Disorder (FND) specialists.

As I shared previously, we have Alli scheduled for a 2-week intensive program down in Florida which will hopefully reduce the seizure activity and help to restore her leg mobility if it hasn’t come back before we leave.

We have also begun Physical Therapy with a woman here in Asheville who has great experience working with people suffering from FND. She has already been an exceptional addition and has given Alli a variety of exercises meant to retrain her brain’s ability to communicate effectively with her body. She has also provided a reference to an Occupational Therapist who, from everything we’ve researched, will also prove to be an invaluable member of the team

We had a consultation with a neuropsychologist, and have decide to push forward with him, as he is extremely well-versed in FND, as well as the program we will be utilizing in Florida. Alli’s first session will be on October 1st.

On Monday, Sept 28th, Alli will meet with another therapist who specializes in Functional Seizures and FND, and who has been a valuable resource to us in many ways already. She has put in a referral for a Neurologist in Asheville who specializes in the disorder as well (these are rare breeds and we are grateful for her support.)

So, we are well under way with the process of building a cohesive team to help Alli navigate and manage through this life-altering disorder.

Please consider sharing her story and the support link below with both your online and offline communities. You never know who has experience with this disorder – and who’s connection might make a huge difference in our world.

We are extremely grateful for all your support.