Please help Savannah!

Hi my name is Shannon Hunsicker. Our daughter Emma's best friend Savannah has been recently diagnosed with Tensor Tympani Syndrome and I would like to help be an advocate for both parents Steven and Sharon Gelsleichter . They both had to leave their job to care for Savannah. Savannah is not able to eat or swallow without being in extreme pain where she has 12+ outbursts a day. I know mom and dad are mentally, physically and emotionally drained and have not been able to rest. Over the past 3 weeks, the symptoms have gotten progressively worse and they have been to over 15 hospitals including CHOP and DuPont searching for answers to how to best cope with this. From all the traveling and having to leave their jobs, I'm asking for a little help to get this family some financial relief at this time. I had several people reach out and I appreciate that. Let's continue to help this family get answers they need.